This area is for those comments that somehow relate to Peyronies Disease but are not coverered under our other topics so please read the topic titles. If a comment and responses develop into a discussion of enduring interest, we will make a new topic for that subject and move all the related posts to their new topic location.
This becomes a very natural way to establish new topics. If you initiate a comment that attracts significant discussion, that becomes a new topic. If it only supports a brief exchange, then those remarks remain here as valuable posts under "General Comments"
As with all topics on PDPDF everything relating to Peyronies Disease is on the table and open for honest constructive discussion.
Hawkman, Site Admin Posted: Sat Jun 25, 2005 3:34 am QuoteHappy Go Lucky wrote:
This site claims you're 7 times more likely to get Peyronies Disease if you smoke, though they didn't offer a study to back it up:
http://thescooponsmoking.org/xhtml/effects/peyroniesDisease.php
But do you guys think smoking and drinking can worsen the condition?
I hope not, it'd be nearly impossible for me to quit now.
Happy, keep in mind that is a "Stop Smoking Site". I am not saying it is not accurate but they may have an agenda.
By the way, I have known people that stopped smoking way way older than you.
Posted: Sat Jun 25, 2005 5:39 am GUEST
Yeah, you're probably right about them having an agenda. It is strange that they're the only site to make such a claim.
btw, I meant it would be difficult to quit not because of how long I've been smoking, but because of how miserable my life is right now. Smoking offers me some relief from the stress, which I desperately need.
Do you have an opinion on wether it contributes to the progression of the disease?
Posted: Sat Jun 25, 2005 12:46 pm
Hawkman
Site Admin
I have no opinion on that and it would probably be wothless if I did since I have nothing to base an opinion on. It would seem a bit strange that they would just pull that piece of information out of the air with no basis.
I do have an opinion that both smoking and drinking can increase liklyhood of ED. Smoking by causing diseased arteries and drinking by reducing hormone levels. I don't think it is too far-fetched that they could impact Peyronies Disease.
However, like the old joke that leaves me out of luck because I do neither. i don't even have anything I can quit.
Someone else must have some information on this.
Posted: Sun Jun 26, 2005 12:10 am
dcaptain
Hey Happy, I have absolutely no idea whether smoking would contribue to Peyronies Disease, HOWEVER, if you ever do want to quit smoking, I have a book I'd recommend. I smoked for ten years and quit a year and a half ago with Allen Carr's book "The Easyway to Quit Smoking." It's somewhat poorly written, but his concepts are dead on. In NO WAY do i have any ties whatsoever to anyone related to quitting smoking - I'm just saying that book really worked for me. Granted, it was a rather tough month; I was crabby for a few weeks, but it does get better. Just tossing that out there. (Of course, just learning you have Peyronies Disease certainly is a difficult time and waiting a bit might make sense too.)
dcaptain
Posted: Sun Jun 26, 2005 3:07 pm
Joshua
Moderator
Vessel constriction from smoking could have a role. I don't think it would be a cause but it could cause the situation to be worse. I would refrain from smoking to help Peyronies Disease. I have never smoked but I still got Peyronies Disease. However, I have seen very good improvement in my condition and not smoking may have helped allow that.
Posted: Mon Jun 27, 2005 4:13 pm
Talon
PDPDF Newbie
Hey all,
If smoking were the cause then there would be a HECK of a lot of Peyronies Disease pateints out there, lol..
But the research shows that smoking can be bad for tissue development and that could slow down the healing process.
Food for thought..
Posted: Mon Jun 27, 2005 11:52 pm
j
Voting Member
Since this is the 'general' topic, I'll change the subject.
I see two possible problems with this forum compared to the BSTC forum.
1. How will newcomers find it? If you Google on Peyronie's you'll eventually find BSTC. But this forum has no associated web site. Right now the users that are here probably all came over from BSTC.
2. On the (admittedly chaotic) BSTC forum, users could create new threads and posts to old thread bumped them to the top - so if you tuned in only once in a while, you could go right to the latest chatter. On this forum, the topics are fixed so we'll end up with a fixed set of threads each of which is 10 miles long. I guess that's good, and bad.
Posted: Tue Jun 28, 2005 2:46 am
Hawkman
Site Admin
J,
Your are dead right on the first point. Here is the solution. I actually purchased a domain name and will be setting that up when I get a break. The next step will be to design a basic web page similar to the APDA who we plagiarize (a little light-hearted sarcasm). Then we will get picked up (listed) on some search engines and we are off.
On your second point, this software works a bit differently than the BTC which is both disorderly and obsolete. The problem is that like an old glove the BTC fit well and it will take a bit to get used to this forum style. If I understand you, you are incorrect that the latest posted topic does not pop to the top of the page. For instance this Topic or thread "General Comments and Topics" will be at the top as soon as I post, and will stay until some one posts in another topic. That is pretty much like the BTC.
Here are the differences. When you go into the thread or topic the most recent post is at the bottom. You read down just like reading a book. The other difference is that the users cannot make new topics here. They can suggest new topics and we will add all we need or want. We are just trying to avoid 30 threads on VEDs scattered through 600 other threads. Here if you remember reading a post about a month back on some new OTC supplement you go to that topic and scroll down. Actually you have powerful search here that will blow you away. If you experiment a bit I think you will love it. On the very first forum page you see look at the top of the page and click on search. What I would give to have that at the BTC where much valuable info is lost in a scrap heap. Also on the same page on the right just above the wide blue line you can click on view posts since last visit. You can be gone a day or a year. They will pop up no matter what topic they are under. You will see you can also pop up all your own topics. On final point. If you click on "Members" at the top of the page then click directly on the members name it will pop open an info box. In there you can click on find all of this members posts. If you play with these a bit you want to strangle the owners that put up the BTC forum.
I hope this made sense J, Click around with it and let me know what you think.
PS: On last point. If you look just under the last post on this page You will see that you can change where it says "Oldest First" to "Newest First" and click on "GO". Now it will be just like the BTC.
Posted: Tue Jun 28, 2005 9:16 pm
j
Voting Member
Joined: 25 Jun 2005
I get it now. Thanks.
Posted: Wed Jun 29, 2005 2:37 pm
Hawkman
Site Admin
j,
My post to you said' You are dead on the first point." I ment to say you are dead right on the first point"
I corrected it in my original post.
Give some feedback on how you like the forum setup since you have clicked around.
Posted: Wed Jun 29, 2005 9:02 pm
j
Voting Member
Yeah I figured that out too
Well what do you think about some additional threads - instead of just one for 'non-oral treatments', maybe one for VED, one for Verapamil, one for AA4500/Collagenase and so on. As time goes by those threads might accumulate some useful information on the respective therapies.
Did you notice that today Auxilium announced 40 million in new investment? If you agree with me that AA4500 is currently our best hope, this is big news. In fact maybe there could be a 'news' thread.
Posted: Wed Jun 29, 2005 10:34 pm
Joshua
Moderator
Good Ideas J
Would you moderate them?
We need some more guys involved.
Posted: Wed Jun 29, 2005 10:48 pm
j
I was afraid you were going to ask me that, but I'm not ready to commit to being a moderator. I have too many other things going on and I'm afraid that I wouldn't be able to do a good job. I won't rule it out for the future, though - I'll think about it.
Posted: Thu Jun 30, 2005 12:25 am
Joshua
We will save a spot for you and of course we will bug you every now and then
Thanks for being a positive part of the forum.
Posted: Tue Jul 05, 2005 10:43 pm
ANTONIO
Hawkman
For what it's worth, I believe you've done an outstanding job on the new site. This truly is "our forum". I feel like I've found a safe haven in which to express my thoughts, concerns & find information to improve my Peyronies Disease condition without having to deal with all the crap from Brand-X forum. I would think the growing number of new membrs feel the same way.
Hawkman, you have the patience of a saint. Don't let all the negativity and attacks get to you. If you bail, where would we go? Don't getme wrong, I don't believe for a second that you'd walk on a commitment you made. I'm just not certain I could put up with all the criticism that you have, after putting in the many hours of work you obviously have to make this site work.
Thanks for all you do
Antonio
Posted: Wed Jul 06, 2005 3:49 am
Hawkman
Antonio,
Even an ex-cop, ex-corrections, cynic appreciates a kind word. It seems like a breath of fresh air. Now that I enjoyed that for a few minutes, the truth is that all of you are the push that gives this the promise of success. You will always know you were here when it started and you breathed life into the forum. I appreciate all of you. I hope we are all beginning to appreciate and respect each other.
As far as me leaving is concerned, I have worked maximum security cell blocks in Federal Penitentiaries. I have walked like an occupying soldier in enemy territory among cells of hatred. I have had convicts with 5 life sentences threaten my life and try to intimidate me, I have had well know organized crime figures try to bribe me. I think I will withstand a bit of immature ranting on a Peyronies Disease forum. I don't share any of that to impress anyone. It is no big deal, it is just how it is. Commitment means a lot to me and I am committed. Even when I go, the forum stays, because it is not mine to take. It really never was about me.
Thanks Again Anthony for the input. I welcome positive and negative input. It is the only way we can know what you want. Offending me is of no concern, so never think twice before you spout off to me.
Hawk
Posted: Fri Jul 08, 2005 9:02 pm
j
Is it just me, or are all the message times wrong for other users too? When I look at the forum all the messages are time-stamped about 4-5 hours ahead of Central Standard time. That puts this forum out in the Pacific somewhere
Posted: Sat Jul 09, 2005 12:00 am
Hawkman
J,
Here is a section from the "Read Second" post on the "Read First" forum. I cut it and pasted it. Maybe it will help. My times are correct for Eastern Daylight Savings Time.
Quote:
PROFILE: Here you can update any of your registration information and what others see when they click on Memberlist. One important item here is Timezone: near the bottom of your profile window. If you are not in the Eastern Time zone of the U.S. your forum times are probably incorrect. Put in the GMT conversion for your area. If you don't know what it is, then click on your map after you click directly on this link:
http://wwp.greenwichmeantime.com/time-zone/
I could have just made this easy by telling your time zone is -5 GMT if you are in Central Daylight Saving Time Zone, but I really wanted to rub it in for not reading my agonizingly boring post on forum navigation.
Posted: Sat Jul 09, 2005 1:31 am
j
So! It was just me. Or, me and any others who didn't read the instructions. And my times weren't 'ahead' as I said, they were 'behind'. Anyway, thanks, it's fine now.
Posted: Wed Jul 13, 2005 9:08 pm
dn
hi i am only 18 years old, have no sexual experience and am seriously confused. For as long as i can remember, i have always had a scar on the bottom of my penis. Now it curves downwards about half way through (3 inches in) and points about 10-15 degrees downwards. if anyone could please answer these questions it would help me a lot
1) do i have peyronies?
2) will i physically be able to have sex? will i not last long since there will be more friction?
3) is there anything more i can do other than vitamin E supplements, which arent working by the way.
4) what kind of dr. should i see, what should i do in general. TY so much for your help
Posted: Wed Jul 13, 2005 9:17 pm
j
Mechanically speaking, 10-15 degrees is not much. The human anatomy easily accomodates that much irregularity, and more. Many of the guys here would consider themselves "cured" if they could get back to 10-15 degrees.
As far as the 'scar' - Is it possible you had some sort of minor corrective surgery as an infant, which your parents haven't told you about? It's not uncommon.
Posted: Thu Jul 14, 2005 7:31 am
Hawkman
Thanks for posting. In addition to J's remarks. that were right on target, I would add a question or two along with a couple comments .
Quote:
Now it curves downwards about half way through
When you say "Now" does this reflect some sudden change, or a condition which has always more or less existed? If this represents a sudden change, you would start with a good urologist. If this represents your own natural curvature that has been with you through puberty, I would just appreciate it as a unique, normal part of who you are.
Quote:
i have always had a scar on the bottom of my penis.
Is this an obvious scar or is it a subtle line or discoloration? If it is an obvious scar and your parents are available to ask, I would suggest you ask them. You can ask directly, or with some humor or subtle approach that works for you. It is not likely to be critical information but may be useful medical history down the road at a time when they are no longer available to ask.
Posted: Fri Jul 15, 2005 4:08 am
Caspian
Happy wrote:
Do you have an opinion on wether it contributes to the progression of the disease?
I have one word for that claim: Ludicrous
_________________
You are what you iz
Posted: Fri Jul 15, 2005 12:21 pm
Caspian
Hawkman wrote:
Antonio,
Even an ex-cop, ex-corrections, cynic appreciates a kind word. It seems like a breath of fresh air. Now that I enjoyed that for a few minutes, the truth is that all of you are the push that gives this the promise of success. You will always know you were here when it started and you breathed life into the forum. I appreciate all of you. I hope we are all beginning to appreciate and respect each other.
As far as me leaving is concerned, I have worked maximum security cell blocks in Federal Penitentiaries. I have walked like an occupying soldier in enemy territory among cells of hatred. I have had convicts with 5 life sentences threaten my life and try to intimidate me, I have had well know organized crime figures try to bribe me. I think I will withstand a bit of immature ranting on a Peyronies Disease forum. I don't share any of that to impress anyone. It is no big deal, it is just how it is. Commitment means a lot to me and I am committed. Even when I go, the forum stays, because it is not mine to take. It really never was about me.
Hawk
WOW! Not everyone could handle being a corrections officer or a cop. I know I couldn't. I thought you worked with animals or something?
_________________
You are what you iz
Posted: Fri Jul 15, 2005 12:36 pm
Hawkman
One is an occupation, the other is a hobby.
Actually there are enough Cops / Ex-cops on this forum to question a connection with Peyronies Disease
Strangely, Peyronies Disease stands for Police Department as well as Peyronie's Disease. I wore collar brass for years with "Peyronies Disease" on it. Never did I dream that those initials would take on a whole different meaning. In my life.
Posted: Fri Jul 15, 2005 1:07 pm
Caspian
Hawkman wrote:
Actually there are enough Cops / Ex-cops on this forum to question a connection with Peyronies Disease
Strangely, Peyronies Disease stands for Police Department as well as Peyronie's Disease. I wore collar brass for years with "Peyronies Disease" on it. Never did I dream that those initials would take on a whole different meaning. In my life.
LOL! That was way too funny.
_________________
You are what you iz
Posted: Fri Jul 15, 2005 3:48 pm
DN
thanks for your help hawkman, you asked me 2 other questions, here are the answers
1)There is no sudden change, but throughout puberty i've noticed it get slightly worse as my penis got bigger. i really noticed the diff between my penis and those in pornography about 2-3 years ago and i figured it was because of the way i masturbated, i changed that, but there was no improvement. Thats why i blame it on the scar.
2) It is an ObBvious scar, its red, and its not j ust a mark, it portrudes slightly, like 1 mm or so. Maybe 2 inches in length when i'm erect. My dad who has the maturity of a teenager once slipped in that something was wrong w/ my dick when i was a kid but he said it in a way that he wanted to embarrass me :S i'm really just embarrassed to ask my parents what it is but i guess i'll have to.
its hard for me to find a urologist b/c i dont have a family dr. so i gotta do that first :S thx for the help man.
Posted: Fri Jul 15, 2005 4:05 pm
Hawkman
Site Admin
DN,
You are more than welcome. I hope it all works out. I would not be too alarmed with 15degrees if it seems it has stabilized. Just consider it an enhancement. Keep us posted and in the unlikely chance it becomes an issue, you are welcome here as a member.
I will be hoping that you not have that misfortune.
If nothing else, maybe visiting the forum helps you see the penis is not indestructable as we tend to think when we are your age.
Hawk
Posted: Wed Jul 20, 2005 2:54 am
dcaptain
Voting Member
Hey DN,
As to your point #2, just remember that this is your health, and that nothing is more important than that. Anyone should respect you for taking the appropriate steps to address this now; I hope you don't have to go through any similar "kidding" when you talk to your parents this time. Best of luck to you in talking to them about it and in reaching out to get a urologist. If you need any support or want to ask more questions, this is the place.
Good luckl.
dcaptain
Posted: Sat Jul 23, 2005 5:11 am
Rzz
Hello everybody. I go by the name Rzz. Some of you may know me from some of the other forums. However for those that don't I'll give you a quick run down. I'm middle aged, divorced and live in the Eastern USA. I served in the Marines for 4 years and fought in Desert Storm as a reservist. I'm a district manager of 9 national known retail stores. I'm a historical author with 2 published books. Had Peyronies Disease for about 7-8 years now. Also have DC in left hand. Been to six different urologist. Two were quakes, two were so-so and 2 were very good, Dr. Levine being one of those. I've tried 4 conventional treatments (3 no success, 1 very mild success) and 3 non-conventional (2 no success, 1 some success). I've heard of just about every treatment there is. Some I know very little about, some I know fairly well and a few I'm very knowledgable about. Although I've done tons and tons of research on Peyronies Disease and Peyronies Disease related topics, I'm still learning everyday and some of that knowledge comes from these forums. I hope for this forum is that we can learn from, help each other and teach each other how to cope with this horrible disease we've been stricten with. Not only do I truly enjoy helping others with the knowledge I've gained over the years, by doing so is therapy for me and helps me cope. If I can help anybody in any way, please don't hesitate to ask. I will be more than glad to do so. So until next time. Respectfully, Rzz
Posted: Sat Jul 23, 2005 6:09 am
Joshua
Moderator
Rzz,
Welcome to the forum!! I have read many of your fine posts on the BTC forum. This has allowed me to gain a great deal of respect for your general knowledge and opinions concerning Peyronies Disease issues. I am so glad you are posting here. I hope to pick your and pdftd's brain concerning DMSO treatments. I am very fascinated with the possibilities with DMSO. When you get a moment please scan the DMSO section and consider commenting on my posted questions. I would appreciate your input.
I think you will enjoy the forum! We are glad you have joined!
Joshua
Posted: Sat Jul 23, 2005 8:34 am
Rzz1
Joshua,
I'd be happy to address some of your DMSO questions. Which ones on the posts did you have in mind? PDFTD has already answered many of them. He is very knowledgable on the subject. However, if you want me to address some of the question he's already addressed, I can do that, but there's very little I'd change. Maybe add a little, but I wouldn't change much. As he said, we are in 100% agreement on the mixture. As far as the rest of DMSO and Thacker's Formula, I'd say we are in agreement on about 90%-95% of it. We have some slight disagreements on exactly why it works. Also some on application. Not mixture mind you, but application. Some people get those 2 confused. In theory, mixture is indeed technically part of application, but they are still 2 seperate things. Think of application as being the whole book and mixture as being a chapter in that book.
Recently I developed a theory as to why the formula works better on some than others and why it seems to not to work at all on some. However, remember it is just a theory and nothing more. Actually it's more of an idea than a theory because a theory has to have at least some type of quantitative scientific backing.
So pick 3-4 questions you want me to address and I'll do it. After I address those questions and you have more, I'll be happy to address those as well, but for now just give me 3-4 to get the ball rolling.
By the way, I'm new to this forum and I'm still trying to figure some of it out. Does anybody know if this thing has a spell check on it?
Posted: Sat Jul 23, 2005 12:09 pm
Hawkman
Site Admin
Joined: 20 Jun 2005
RZZ,
I along with many others have been hoping to see you here since day one. Welcome, and many thanks for joining the effort to build a functional forum. Our membership, number of posts, and member expertise has grown tremendously in just a month. Now that we have a forum where we can actually discuss Peyronies Disease, your experience is a huge asset.
Rzz wrote:
Does anybody know if this thing has a spell check on it?
There is no spell check on this forum software. A new version of this software is due to come out soon and MAY have spell check but it is only speculation what added features it may have. When the new version comes out, the members will not have to do anything. The upgrade will be automatic.
A solution to those wanting "spell check" is to cut your post and paste it into MS Word or another word processor. Correct spelling and paste it back to the post window and click on submit. Of course, you can just start in a word processor, cut the contents, open a "reply window and paste. I know this sounds like a pain but it is very easy once you get the hang of it and it only takes a couple seconds. If anyone has trouble with this just ask for more details in the "Off Topic" area or in a "private message", and I will be more specific.
Also, unlike the BTC forum. you can edit your post after making a post
Posted: Sun Jul 24, 2005 2:59 am
dcaptain
Rzz,
Welcome! Awesome, it's great to have you here!
dcaptain
Posted: Fri Jul 29, 2005 4:34 am
PDFTD
Hi,
Another idea to lessen the complications of writing a post full of spelling errors would be to put into your links bar on the top of your browser an online dictionary. I have one and will gladly post it for anyone who wants to use it.FYI, it's a Merriam/Webster version.
http://www.m-w.com/
Best to all,
Barry
PS: RZZ, Glad to have ya aboard. I told Hawkman that you would never join,I'm glad I was wrong.
Posted: Mon Aug 01, 2005 1:58 pm
Guest
Becky wrote:
I think his case is pretty unique considering his age - 21 (I am 19). It is definitely Peyronies Disease though, he has all the classic signs. We are both holding out hope that it will get better with time. Does anyone know if there is a greater chance of it healing itself if the disease onset is at a younger age?
Becky,
His age is not necessarily "unique". Many men contract Peyronies Disease at a young age, such as 21. I have even seen cases where some even younger than that have it. I would first ask you, since you mentioned he has all the classic signs, has he gone to see a Urologist? You should encourage him to visit one if he has not. Do not make the mistake of armchair diagnosing something as serious as Peyronies Disease, either one of you. Without a confirmed diagnosis from a Urologist, it could be something else similar to Peyronies Disease. There are many other conditions that mimic the "classic signs" of Peyronies Disease.
The good news is that, yes the younger men who do have Peyronies Disease seem to be more apt to "spontaneousely resolve". As the cause of Peyronies Disease is unknown, so too the cause that some may spontaneously resolve is unknown. After being officially diagnosed, it is also recommended getting a second opinion. He must be sure he has Peyronies Disease before going forward with any type of treatments, whatever they might be.
When he knows for sure, you and he can put together a plan on how your going to deal with it. For example: no sex for at least the 1st initial stage of Peyronies Disease, maybe some minor foreplay just to keep the blood flowing. Nothing which could further injure or irritate the penis!
I commend you for coming forward and taking part in your boyfriends healing process, he already is a step ahead of most men because of it. Keep an open and postive mind with him, that will go miles in his own personal psyche. In his mind, his very manhood is at stake! Good Luck!
Mr Wizard
Posted: Mon Aug 01, 2005 2:07 pm
bob
Voting Member
I agree with Mr. Wizard that Becky's boyfriend should get himself to a urologist without delay. Something besides Peyronies Disease could be the culprit. Nothing is to be gained by not confirming and/or delaying the diagnosis.
I've noticed that there seems to be a difference of opinion on whether one should be sexually active or inactive during the "acute" stage of Peyronies Disease. I was told to avoid anything that had the potential to injure myself, but to otherwise carry on as normally as I could. Some members of this forum have also taken supplements with the aim of increasing their blood flow, reasoning that this is a good thing.
On a totally unrelated subject: Anyone know what has happened to the APDA site? The domain name seems to have expired.
Bob
Posted: Mon Aug 01, 2005 3:10 pm
Hawkman
bob wrote:
On a totally unrelated subject: Anyone know what has happened to the APDA site? The domain name seems to have expired.
Bob
Wow! I am sure they will be all over that as we speak and we can count on them being back up shortly.
While we are on the subject, We clearly have different formats and guidelines on our forums but we clearly have a greater common concern. I will be signing up for my membership in the next day and I encourage those that can do so to support them with a membership. Really, I see it as supporting ourselves as a Peyronies Disease community.
I can't speak for the APDA but I am sure it is possible to contribute any amount (more or less) than a membership fee. I am admittedly not the best source for discussing this. I do speak to Marty regularly and Stan on occassion. I will pass a few more details along on this topic for those interested.
Posted: Mon Aug 01, 2005 6:06 pm
Marti
Thanks Hawk for the support, we do indeed share many of the same goals, and all of the concerns, and I want you to know that I appreciate this forum and what you are doing emensely. The more we speak out, the more we all claim our right to sexual health.
Any and all donations are gratefully accepted. There is a donors button on our home page. We are at a real critical time in our org right now. The opportunities are endless and we are looking at ways to take advantage of them. As you and I spoke of, the AUA convention is comming up in May of 2006..15,000 physicians and 5,000 vendors under one roof!..For the first time we have the opportunity to be seen as a physical presence speaking with one voice for Peyronies Disease patients everywhere, APDA members or not. The more members we have(note, this doesn't mean we publish names...we don't, our laws prevent that), the more credibility is given to our org in working for you. Same with the main purpose in having every man who visits our forum complete the survey. Big Pharma and the powers that be respond to numbers, the bigger the number, the more they pay attention. So thank you again for what you are doing.
Oh and one more thing (snicker)..general estimate based on the "medical consensus " that Peyronies Disease strikes between 1-5% of men" ..that may mean we possibly have approximately 13.5 million in the US alone (5%)..now that is a number we would like to have on our "membership list" hehe.
Take Care
Marti
Posted: Mon Aug 01, 2005 8:04 pm
Becky
bob wrote:
I agree with Mr. Wizard that Becky's boyfriend should get himself to a urologist without delay. Something besides Peyronies Disease could be the culprit. Nothing is to be gained by not confirming and/or delaying the diagnosis.
Bob
He told me he has gone to see two doctors about it, but that they both told him nothing was wrong without even taking a look at the problem. I told him he should go see someone else but he is discouraged. He has scoured every web site he could possibly find on Peyronies Disease and related diseases, and so have I, and we both agree that it couldn't possibly be anything else. But I agree that a doctor's diagnosis would be a good thing to have. I think I will tell him about the vitamin E treatment and try to get him started on that. He is very reluctant to take pills because he doesn't want to be dependent on them, but I think he'll be OK with vitamins =)
Posted: Mon Aug 01, 2005 11:10 pm
Hawkman
Becky wrote:
He told me he has gone to see two doctors about it, but that they both told him nothing was wrong without even taking a look at the problem. .........He has scoured every web site he could possibly find on Peyronies Disease and related diseases, and so have I, and we both agree that it couldn't possibly be anything else. But I agree that a doctor's diagnosis would be a good thing to have. I think I will tell him about the vitamin E treatment and try to get him started on that. He is very reluctant to take pills because he doesn't want to be dependent on them, but I think he'll be OK with vitamins =)
Becky, there are 40 members here and many more guests. Many that have scoured web sites for years and carry the information in their heads or have posted it on a forum. Many that have been to the best Peyronies Disease doctors in the world, and many have researched and tried many alternative treatment over decades. When you feel too discouraged to do all the research, or to develop a plan of action that is when it is most important to come here and ask. Some men here have had Peyronies Disease for 50 years.
Supplements are food. Tell him is too late, he is already hooked on food . If I were going to try alternative treatment, I would take vitamin E but it is at the bottom o[f my list of things that are likely to help. I would not try these items one at a time. There is much information here on treatments that carry very little to zero risk and have at least some studies to indicate they help.
Here are a few starters. Try to get him on the site. Actively talking and taking action are more help than most imagine until they do it.
Posted: Thu Aug 04, 2005 3:31 pm
Marti
Morning,
Just wanted to give everone a quick "heads up". Stan put up a new topic and Q&A an on the site (also several new abstracts)..you can get to them from the home page...
Dr Wayne Hellstrom, Prof of Urology, Tulane Univ. Med School, submitted them. The topic #8 "Other non surgical treatments" is really interesting. He talked about what they used to do for Peyronies Disease..my first thought (and last too) was "good grief!" . It is a wonder "IT" didnt rot off with what they used to do. It at least showed me that we have made some progress.
I think everyone here has our addy, but just in case..it is www.peyroniesassoc.org ..Stan also put up a link to the forum here so you can get back and forth easier.
Take Care
Posted: Thu Aug 11, 2005 8:55 pm
Larry H
Just a quick hello at all.
I am delighted to see the the relationship develop between the PDPDF and the APDA, as it will work to the benefit of all who suffer with this disease. We all share the same goal in fighting Peyronies Disease, and the more resources available helps speed advances in education, awareness, and new treatments.
Patient advocates can, and will play a major role in moving Peyronies Disease from the closet, where it's been for too long, and out into the awareness of the general population. Perhaps we will then start to see the increase in research and improved treatments that has been so long in coming. Patient advocate support of all Peyronies Disease related forums and associations is an important factor in the overall fight against Peyronie's Disease.
My Best,
Larry H
Posted: Fri Aug 12, 2005 3:55 am
Hawkman
Larry,
Welcome,
It would be difficult to over emphasize how good it is to have you here. I know you are busy, but hopefully you will not be missing for too long at a time. I know that no matter how busy you are, you will find ways to help the Peyronies Disease cause whenever and wherever you can.
I agree with your remarks about cooperation and interaction between the various components of the Peyronies Disease community. We all try to fill a niche or vacuum, and cooperate from our area of strength. It is not about competition. I see it more like the different branches of the Service supporting and complementing each other in a battle we have to win.
Thank for the post
Hawk
Posted: Fri Aug 12, 2005 3:02 pm
Larry H
Hawk,
Thanks for the kind words, they are most appreciated.
You know I speak of awareness, or the lack of Peyronies Disease awareness within the general population very often. It's an issue that is very close to me. It concerns me that so many who suffer with Peyronies Disease are reluctant to discuss their condition with anyone shall we say, on the outside.
I understand the very personal and private nature of the disease, and I can understand why many would be embarrassed to discuss it. On the other hand it's a major reason why Peyronies Disease is still considered a rare or orphan disease. The NIH classifies it as an orphan diseas thus greatly hampering funding for research. As more men open up about their Peyronies Disease we realize that it affects far more then less than 3% of the male population in this country.
Personally I not ashamed of my Peyronies Disease, I did nothing wrong to get it. I look at it the same as someone who has arthritis, the condition just occured. One of our efforts must be aimed at getting men who suffer with Peyronies Disease to draw themselves up and become more open with their condition. Only in the daylight of public understand will we be able to move forward toward better treatments and a possible cure.
Just an additional thought on my previous post.
My Best,
Larry
Posted: Sat Aug 13, 2005 12:06 am
Hawkman
Larry H wrote:
Hawk,
I understand the very personal and private nature of the disease, and I can understand why many would be embarrassed to discuss it. On the other hand it's a major reason why Peyronies Disease is still considered a rare or orphan disease.
Personally I not ashamed of my Peyronies Disease, I did nothing wrong to get it. I look at it the same as someone who has arthritis, the condition just occurred. One of our efforts must be aimed at getting men who suffer with Peyronies Disease to draw themselves up and become more open with their condition. Only in the daylight of public understand will we be able to move forward toward better treatments and a possible cure.
Larry
Larry, your point is well made and well taken. However, even as someone that can describe the discomfort and humor of 3 prostate biopsies in great detail with almost anyone, I have reservations about this. I hesitate to express my concerns here because I wish it would happen and I don't want to present an argument against your point. However, I have always believed that a discussion of issues only helps (that statement may have just undercut my argument)
If I reveal my Peyronies Disease to my family and friends, along with that there is much implied information that I am giving and much speculation about the private relations in our bedroom. I am a bit uncomfortable making that a shared issue with my daughters-in-law, grandchildren, and some others. Even if I revealed, "I have Peyronies Disease", that seems to do little to educate on the far reaching, devastating effects of the disease. It was said that President Clinton had Peyronies Disease. That knowledge did nothing for me since I thought it meant is penis had a general acquired curve to the right or left, no big deal. This means that in addition to revealing it, we would be obligated to explain it and educate them. Realistically, how far can one go down that road. Also, how far would we get down the road before someone said, "ok, that's a little more information than I needed." ?
I remain conflicted because I wish everyone else would go down to the Capitol and shout, "I have Peyronies Disease and I demand a cure", or put a bumper sticker on their car. Then, I could sit home and reap the benefits. Being relatively new to the secret boys club of Peyronies Disease, it may just take some time for me to resolve the conflict in my own mind.
I suspect that discussing this issue within the safety of the forum, is exactly where it has to start.
Posted: Sat Aug 13, 2005 1:33 am
Marti McKown
I have a thought for you to ponder..sort of. I am not sure it is necessary to "expose" (sorry couldn't think of another word) yourself unless you want to.
I am also not sure a physical march on Washington so to speak is even necessary. What I do believe is necessary is grass roots advocacy, and that can take many forms...and needs many difffent types of people doing diverse jobs to accomplish it...
Some may not choose to admit or have to talk about having the disease, but can do so much behind the scenes that it makes it possible for those who choose to be seen publically to do their part in the effort.
You're right this is a great place to discuss it.
Take Care
Posted: Sat Aug 13, 2005 8:44 pm
dcaptain
Marti and Hawkman, you have started an important conversation. If I can throw my two cents in on a few points...
I am also new to the Peyronies Disease world, and have yet to find the resolution in my mind to tell anyone about it. I understand your reluctance, Hawkman, and while I want to tell people so they understand certain aspects of my life, I have yet to get to the point where it is absolutely necessary. Perhaps I someday will.
That being said, advocacy is somewhat of another matter entirely. I think the nature of what is being advocated for largely determines the advocacy strategy, and whether or not that requires self-disclosure would come into play once it was decided what the goal was. Even if self-disclosure was something that would make the advocacy work be more natural or telling, I would think it could be done without sharing that information with your friends or family (outside of a spouse, say).
I guess what I'm thinking is that it takes one level of "commitment," say, to get up in front of people and say "I have Peyronies Disease" and to talk about it, and perhaps a much lesser level of commitment to sign a letter that states the same and send it to a member of Congress. I think if anything, some advocacy work could be done discreetly - I for one would find it much easier to explain Peyronies Disease (including my own) to someone I didn't know, even if it were a member of Congress, rather than a friend or family member. At least for now.
But this does bring up another point, which is what should the goals of any advocacy be? I don't know that public education *necessarily* is part of the equation - I have no doubt there are many other rare diseases that are unknown but receive attention from the *right* people. I guess what I'm thinking is that, given the possibility of most-likely limited resources, coupled with the nature of this disease and Hawkman's probably accurate read of the public's thoughts on it, spending time/money wisely is probably paramount.
I am just throwing this out there, but perhaps there are other sexual health issues that could serve as advocacy models? There has to be something else that is similarly personal, yet requires advocacy work.
Nonetheless, again, I think the biggest issue is determining what the goals would be. If it is increased funding for research, that might be one strategy. If it is something else, it might be another. Again, just my two cents and a big THANK YOU for starting this conversation.
dcaptain
Posted: Sat Aug 13, 2005 8:54 pm
Larry Holcombe
Hawk,
I understand your feelings about this, you are by no means alone. I also know I'm a little different than most in my attitude with my own Peyronies Disease. I'm probably 10 years older than you and that makes a difference, as the younger you are the greater the impact, although some may disagree with this point.
Children are also an issue. They know they didn't come from under a rock. but most don't want to think about their parents having intercourse. My two grown sons know about my Peyronies Disease, as I wanted them to know that our equipment is not as tough as once thought. My daughter in laws have also read some of my posts, and know of my work as a Peyronies Disease advociate. Now, with all of that said I realize I'm in the minority in my approach to my Peyronies Disease.
The fact remains that Peyronie's disease concerns the erect penis, and the ability to engage in sexual intercourse. Even in todays open society that's a bit over the top for general discussion, and doesn't even address the stigma that most men have concerning how others will view them as being less of a man. So Peyronies Disease remains a closet disease. As such, it's not well know within the general population making very difficult to get funding for research, and the development of new treatments.
Now, my dear friend Marti makes an excellent point, as she always does, in that there is a place for all advocates to help fight Peyronies Disease, no matter the level of openess desired. Getting involved in some way, on the inside or the outside, is also excellent thearpy for the mental side of the disease.
I'll continue to encourage all who suffer with Peyronies Disease to try to become more open with their disease. However, I understand and have compassion for those who wish not to do so.
Larry
Posted: Sat Aug 13, 2005 9:35 pm
Larry H
I wrote the above message to Hawkman and Marti, just didn't hit the right button for my name to appear. Sorry
dcaptian:
You wrote: "But this does bring up another point, which is what should the goals of any advocacy be? I don't know that public education *necessarily* is part of the equation - I have no doubt there are many other rare diseases that are unknown but receive attention from the *right* people. I guess what I'm thinking is that, given the possibility of most-likely limited resources, coupled with the nature of this disease and Hawkman's probably accurate read of the public's thoughts on it, spending time/money wisely is probably paramount. "
Public education is necessary because those of us who have worked and researched Peyronies Disease for some time feel, along with many urologists, that Peyronies Disease is not a rare disease. The NIH classifies a rare or orphan disease as affecting less than 3% of people, or group of people. There is solid evidence that Peyronies Disease affects far more than 3% of the male population in this country. Dr. John Mulhall did a study that showed an incidence of 8.9% and that is probably low.
Why is this important? If the NIH classifies Peyronies Disease as an Orphan Disease, funding for research is almost non-existent. In addition pharmaceutical companys will not spend the research dollars to develop new drugs for a rare disease that they feel drug sales will not give them a fair return on investment.
In a nutshell this is the problem we face having a disease that many don't want to acknowledge, or even bring it to the attention of a urologist. It's under reported and thus felt to be rare.
My Best,
Larry H
Posted: Sat Aug 13, 2005 10:39 pm
Wizard
Marti said : "educate" the public that 1. it exists..2. there are at risk factors for many men 3. prevention is an issue 4. treatament is an issue 5. the public also needs to take action because Sexual Health is a Right..not a priveledge for only those who can afford it. In short it is the "Your Health, Your Life, Your Right" focus. In other words "Just cause you don't got it now, don't mean you won't get it in the future"
Now we seem to be going the right way! Marti hit it on the head with her last comment. "Just cause you don't got it now, don't mean you won't get it in the future"
Let me pose a question. How many men, if they knew about Peyronies Disease before they got it, would have been more careful while having sex? Would they have not tried hair growth products? What ever it is that may or may not cause Peyronies Disease. The key point in what is being discussed about advocacy and public education is, "If only I knew!" Hawkman himself has made this very statement, albeit about his experiences with ED drugs, but you get my point.
Some may have a problem with discussing this with their family members and that is understandable. As long as Peyronies Disease is not discussed in the open it will be pushed aside and ignored. Who continues to suffer because of this? The very men who have this debilitating disease. So we, the suffering men have a choice, status quo or do something about it. The question remains, what are we to do about it?
Wizard
Posted: Sun Aug 14, 2005 12:30 am
j
A good discussion, and my contribution may sound like I'm once again being devil's advocate, but here it is. I see no benefit to myself, or to friends and family, from me announcing out of the blue that I have something called Peyronie's Disease.
Those of us with Peyronies Disease have had time to get used to the idea. We talk casually - if anonymously - about things like "penile curvature" and "erection quality". But for people who haven't had to deal with something like this, that discussion would be excruciating. They'd have no idea how to respond and would probably just blurt out things that made them feel foolish and embarassed later.
And why burden them? What's to be gained? I've discussed it with a doctor, and with my wife. It simply doesn't affect anyone around me - it isn't making me miss days of work, or walk with a limp, I don't have to suddenly excuse myself from the table and run to the bathroom. If it causes me some depression, frustration - everyone has their own secret sorrows and private battles. That's just part of life.
I don't mean to sound negative about this. Like most people I have a couple of family members who drone on about health problems, iincompetent doctors, the unwanted details of their last surgery. I've just decided I'm not going to be like that. When people ask me how I am, I say "fine, how are you?"
Posted: Sun Aug 14, 2005 12:33 am
dcaptain
This is an awesome discussion and everyone is making incredibly salient points. Fantastic!
Okay, Larry H, I see your point but I would argue (and I hope you know I mean "argue" in the friendliest sense of the word!) that the public education that we get or have gotten on erectile dysfunction (since it is or at least historically has been largely stigmatized) has largely come from sources of treatment. Let's face it, Viagra has done wonders for ED and for raising the awareness of ED. So have those commercials from all the medical treatment clinics where doctors specialize in sexual functioning. It has, to a large degree, normalized the issue.
However, I feel as though you didn't see a lot of public discussion of ED before Viagra, and before treatments were available. I guess what I'm saying is that, to parallel Peyronies Disease, ED became a "public" thing once there was something to treat it. It's public because the pharmaceutical companies want to sell drugs, and there is a huge market. Similarly, docs want to treat it, and again, there's a huge market. We hear about it on TV, on the radio, in the papers.
However, it wasn't as though the ED community was creating all kinds of public education spots before Viagra. It was a very private and personal health concern. I have no doubt it was discussed with doctors all the time, but (and I may have completely missed it so correct me if I am wrong) it didn't seem as though the ED community was out there beating the drum to raise awareness. There was, however, perhaps a culmination of forces: a realization on the part of Big Pharma that ED was a potentially huge market, and the overabundant willingness of patients to address it with medication/treatment.
I guess the parallel I see for Peyronies Disease is that we most likely don't have the resources to raise the awareness of the public to the level we probably want. Your point about struggling with this for years is well taken, as it the point that it is under-reported. I've read that study and if those numbers are accurate, then there definitely is an untapped market just waiting for medicine to address.
However, it seems to me the people who need to understand the potential market is not the market itself, but the pharmaceutical companies and organized medicine. I guess what I'm saying is that the public education, in my mind, should be much more targeted toward those ends. For example, see Dr. Levine's abstract on the APDA site. Many docs don't even know about Peyronies Disease! If urologists all over the country decided to regularly screen for Peyronies Disease, it would place it in the mind of every male patient who went to see the uro. Right? I think that's where the issue of it being "preventable" comes into play. If docs started talking about the need to ensure an uninjured penis, you know guys would pay a lot more attention from the minute they figure out how to work the thing. I for one didn't even know you could get Peyronies Disease before I found myself scrambling on the Internet to figure out what the heck was going on!
Sorry if I'm rambling....
dcaptain
Posted: Sun Aug 14, 2005 7:38 pm
Marti McKown
He, He you guys are sharp as a tack!..I love this..
Re Ed..that goes back part way to the AFUD, an arm of the AUA..and you are right in many aspects, as a "public" issue it was on the back burner, until "big Pharma" got the idea, again..the AUA is lurking, Sexual Medicine. Now exactly how it came about I cant say totally, but again we deal with numbers. Physicians who study and print those studies, membership in the AUa, lobbing (in the AUA) etc..
Currently, our docs face the same problem we do..even among their peers (see Stans note on the AUA on our site)..Peyronies Disease is at the bottom of the list. Now heres the deal from our "Patients Physicians" perspective. We have the "high profile docs" as some one called it...we have the patients (at least some) we need data/ bodies to mobilize both..that creats the "lobby"..we are supporting our docs within their community to get the issue upped. I.E Dr Levines study on physician knowledge....case in point, when we get to the AUA (please God) convention..there we are with..10,000 urologists, and a lot of yakking (including press corps)..in booths and out of them..the Docs like Levine are supported by a public "lobby" (us) for lack of a better word...impression..These people are serious...they have a group represented here. This is backed up by our collateral material..surveys, studies, brochures...essentially..chatter and noise. In a back door way..public pressure become visual..they can "see it"...also Big Pharma will be there...hmmmmm anybody got a soapbox and mic I can borrow..cause believe me, I have no hesitation about grabbing a necktie and saying.."listen up"..to those guys.
Education is always the key to recognition..just depends on what the education is about..we have stuff on the site to educate the man with Peyronies Disease...we need "stuff" developed to educate the public about Peyronies Disease...both are education, but they are written differently, and targeted to the "market" we are trying to reach appropriately. You asked about money..Back door marketing..press feleases, feature articles, internet..good majority of that is free stuff and virtual reaity gets the word out fast.
The biggest stumbling block we face is "body count"...it takes more that one person doing it..it takes many, each working in a target area, and coming together and pooling ability, knowledge, interest, and as I always yak about..committment and communication.!
Thx,
Marti
Posted: Sun Aug 14, 2005 8:00 pm
Marti McKown
Sorry missed this and I feel it is real important, probably one of the most important things mentioned here..Response to J...The neatest thing about virtual reality, or marketing this stuff is that you (meaning the individual) definately does not have to make his condition publically known if he choses not to...the committees etc are in the background..it is the techy help that makes the difference to a broad based audience. Know anything about ad design, data bases, writing copy, researching congressional bills....lots of stuff, no public view involved, yet, without those who want to do that kind of stuff, it remains talk...and no public knowledge...
ok, I'm gonna shut up now , and yield the floor
Posted: Sun Aug 14, 2005 10:23 pm
Larry H
decaptain,
Don't worry about "rambling" or "arguing" as it's these types of discussion that bring ideas to the table.
I think your parallel between public knowledge of EDand Peyronies Disease is a good one because of the nature of both conditions. However, I do believe that there has been more general understand of ED over the years since there are a number of health conditions that can result in ED. We know that the VED and inplant prosthesis were developed for the ED patient. Doctors treating Ed usually knew the cause, prostate surgery as an example, and could address the problem. Peyronies Disease on the other hand is such an unknown disease in all aspects of the condition. The best Peyronies Disease urologists in the world disagree on how to treat it. So you take this existing situation in the medical community, and combine it with the nature of the disease and you have a real closet issue that has all but remained stagnant for so many years. This, I think, is what we are trying to address and fight.
J, I fully understand your position, and can tell you without reservation that it makes perfect sense. You wife knows about it as does your urologist, so why bring others into this very personal matter. I think this is the mainstream view of most Peyronies Disease patients.
Your mention of your urologist perhaps hits on a workable key in this whole issue of awareness. Since most of us do have a urologist, and those that don't, should, maybe this is an area when patients in general can promote awareness, and not have to stand on a soap box and declair to all you have Peyronies Disease. In short start being a Peyronies Disease advociate with the urologists, put a little pressure on them about their understanding of the mental side of the disease. Read the Levine survey report on the APDA site and ask them the same questions the survey asked, and start pushing them, in a gentle manner, to increase their Peyronies Disease education.
I think this approach fits nicely with what Marti has said in her previous posts. There are many niches that the Peyronies Disease advociate can fill without having to "go public". The lack of awareness in the urological community is just not acceptable, so maybe pushing them a bit will help get the ball rolling. I don't think that Dr. Mulhall or Dr. Levine would take issue with this, as they know the problem, and that was the purpose of the Levine survey.
Anyway, just some additional thoughts.
My Best,
Larry
Posted: Tue Aug 16, 2005 1:21 am
Hawkman
dcaptain wrote:
However, I feel as though you didn't see a lot of public discussion of ED before Viagra, and before treatments were available. I guess what I'm saying is that, to parallel Peyronies Disease, ED became a "public" thing once there was something to treat it. It's public because the pharmaceutical companies want to sell drugs, and there is a huge market. ...........
However, it wasn't as though the ED community was creating all kinds of public education spots before Viagra. It was a very private and personal health concern. ........................................
I guess the parallel I see for Peyronies Disease is that we most likely don't have the resources to raise the awareness of the public to the level we probably want. ..................................
However, it seems to me the people who need to understand the potential market is not the market itself, but the pharmaceutical companies and organized medicine. I guess what I'm saying is that the public education, in my mind, should be much more targeted toward those ends.
dcaptain
Even though Larry makes the valid point that ED is better understood than Peyronies Disease, I have to say dcaptain that in my mind you made a top notch annalysis and correlation. It may not be saying much, but it impressed me.
Posted: Tue Aug 16, 2005 1:57 am
j
dcaptain is correct in saying that in our system, nothing really happens until there's a product to be sold. Let's not forget that there actually is a legitimate Peyronies Disease product currently making its way (maybe) through the system. It's AA4500/collagenase, and from my reading it seems to be on a firm basis of theory and experiment. The same enzyme has already been through Phase II trials for Dupuytren's contracture and appeared to work well; and Peyronies Disease tissue is essentially the same thing.
I think AA4500 isn't getting the attention it deserves. AA4500 essentially dissolves the form of collagen that makes up Dupuytren's cords and Peyronie's "plaques". The results of the trials on Dupuytren's were unequivocal; it works. One nice thing about Dupuytren's is that accurate, objective measurement of improvement is dead simple - the finger either straightens out or it doesn't. No placebo effect, no subjective "self-reporting".
Is there anything an individual, or the APDA, could do to move this thing ahead? Maybe not, unless generating "buzz" among urologists encourages Auxilium to spend the money and complete the trials.
I have no connection with or financial interest in Auxilium.
Posted: Tue Aug 16, 2005 2:30 am
Hawkman
Yes j, but you do have a vested interest in straightening your penis. That destroys all your objectivity and discredits all your opinions.
While I fully understand the point of your disclaimer, I don't fear people that make a profit. It has driven almost all the progress on almost every product. An idiot or a mistaken genius can give out information that is just as bad as that of a person with a profit motive.
So I say, critical, probing questions, patient interaction, and analysis of the studies will prevail over misinformation. I also think that while I don't fear someone with a profit motive, I do fear forming any interests that detracts from our only interest which is the Peyronies Disease Patient. I apply the same test as I did with inmates. Don't accept any minor gift or favor that would impact the way you would treat that inmate in any way. Once we do, we betray our pledged loyalties.
Posted: Tue Aug 16, 2005 3:51 am
Marti McKown
Hawkman wrote:
So I say, critical, probing questions, patient interaction, and analysis of the studies will prevail over misinformation. I also think that while I don't fear someone with a profit motive, I do fear forming any interests that detracts from our only interest which is the Peyronies Disease Patient. I apply the same test as I did with inmates. Don't accept any minor gift or favor that would impact the way you would treat that inmate in any way. Once we do, we betray our pledged loyalties.
Hawk, would you clarify what you mean by the above...sorry I'm a little dull tonight.
thx,
Marti
Posted: Tue Aug 16, 2005 6:13 am
Hawkman
Marti, I was afraid someone might ask because I literally fell asleep every time I tried to proof read it. However, I just slept in the chair for about 2 hours so maybe I can clarify it before I go to bed. don't expect too much though.
If a pharmacy or peddler of penis stretchers wants to join the forum, they are welcome. I have no fear of them. I have little concern that they have a profit motive behind their claim. The proof is in an examination of their claim. We have to be skeptical of every single claim regardless of the source. Misinformation is misinformation. It makes no difference if it is intentional, through ignorance, or for any other reason.
If I as administrator or moderator were to accept payment for advertising however, that is an entirely different situation. Now I may consciously or unconsciously be more interested in preserving income than in serving the forum. The only one that must be free of a profit motive is the forum leadership because we are in a position to do more than just make a false claim. We are in a position to influence the discussion.
I made the inmate comparison because of my background. If I accept anything of value from and inmate, will I be objective in enforcing rules against him? It becomes a slippery slope. That's why I can support others with a profit motive but Joshua and I could never have profit motives of our own.
It probably is not even worthy of the space I took up with the explanation it so I may read it tomorrow and delete the entire thing. It no doubt revolves around a clarification of a stupid imposter post I read of some other forum recently.
I regret that the 2 hours in the chair didn't help much.
Rest assured Marti, It is not your mind that isn't working.
I think I apologize for the space taken up by the last three post due to my rambling.
Good night.
Posted: Tue Aug 16, 2005 8:07 am
Marti McKown
One good sleepy post deserves another
I agree a lot with what you said, my original reading was interpreted from an organizational standpoint rather than from your forum adm stand point, however our positions are not dissimilar.
J asked about Auxuillium, and from an NPO like APDA the issue is very similar. We legally cannot endorse any product or entity. Like here our concern and obligation is to the public we serve (Peyronies Disease patients, etc). However we can support their efforts and bring information about it to the membership. In re a company like Auxillium, they are a small pharma that has a niche market..sexual medicine..as to Peyronies Disease basically "they get it". I have no problem stating that they will do everthing they can to bring the product to market, conduct further research and probably look for possible participants in clinical trials. We support that effort and through our org are able to inform the membersip about what they are doing as we become aware of it. But it stops at the information given that they are looking for people, we cannot give out any contact information, and wouldn't any way. Basically they could donate to us but we cannot be influenced by them, Perhaps at some time we may even have some of their results on the site. However other than the information, we cannot endorse the product..we can't sell because that is a conflict of interest..the physician and the patient have to decide as to its use.
Same way that a physician "member" can look and have info about the product, trial results etc..however they are the ones who decide to prescribe.
Perhaps the neatest thing we are doing here, and at APDA, is that there is a central point of reference for a large audience. One of the other reasons why Big Pharma, and researchers look at us more favorably..up to now potential participants in clinical trials have been from very select and small population say 20 t0 30 men.
With an org that has a large membership, the pool is bigger and more varied. The study at that point becomes major and more representitive of the population.
In both cases the welfare of the individual comes first. Freedom of choice based on all available information we can provide.
While there is non - information all over out there, we also have internal rules regarding that to..mainly "saftey first"..perhaps that is the one area where we appear "biased"...with a medical background, and being a granny, I am perhaps over cautious when I hear discussios on "try this"..we can't stop, or muzzle the discussion, but guaranteed you'll hear me over the loud speaker saying, "be careful, boys"...
Thankzzzzzzzz
Posted: Tue Aug 16, 2005 9:33 pm
j
If Auxilium is a small company, they'll be limited in their ability to market their product to urologists. And if they can't make enough money from their product, it will die.
If AA4500 gets through the trials and turns out to be effective, that's the point at which we (forum participants) might be able to take some meaningful actiion. To the extent we can at least make urologists aware of it so that they look at the test results and draw their own conclusions, we can help Auxilium succeed.
AA4500 isn't a sure thing. There are significant differences between Dupuytren's and Peyronie's, and the way AA4500 was used for Dupuytren's won't quite work for Peyronies Disease - we can get into that discussion later. There may be other complications or side effects. But in my opinion it's the only thing visible on the horizon. Another possibility is that some existing, approved drug - maybe an antifibrotic - is found to be effective against Peyronies Disease. A long shot at best.
Posted: Wed Aug 17, 2005 12:22 am
Marti McKown
Quote from: jIf Auxilium is a small company, they'll be limited in their ability to market their product to urologists. And if they can't make enough money from their product, it will die.
Hi J,
When I said Aux. was a small niche pharma I did not mean to imply they were a small company, only small in comparasion to say a Pfizer (who has their finger in every pie). Actually is is because of their "Target Market" those suffering from sexual dysfunction, that makes them a very viable player in the drug world They have reps all over the country that distribute information, samples, etc to urologists. They also have a very savvy marketing department that knows how to encourage donors (BIG donors).
You made a very important point about our roll in assisting them to get their eventual product to those who have Peyronies Disease...we are a kind of "mini infomercial"...the power we have to inform our personal physicians is huge if we choose to use it, not just about what ever drug is available, but about Peyronies Disease its self. Back to patient advocacy 101.
If through research and development this drug proves effective then they will get the word out....and like you I'm not a rep for Aux, nor to I hold an opinion on the product. But I sure am rooting for them in their efforts, regardless of the outcome.
Leaving no stone unturned is the name of the game!
Take Care
Posted: Wed Aug 17, 2005 9:34 pm
Michael
Hello there--
Joined up just today; new to all this (recently diagnosed-- I'm one of those "woke up one morning with a broken penis types) and I can see it's going to take some hours to catch up on the threads. I am so glad you are here... I think my biggest shock is never having heard that this condition even existed before it happened to me. If the conservative estimates are that 1% of all men are afflicted.... my simple math puts us at somewhere around 1.5 million in the US alone. If it's really 3%, make that over 4 million. Worldwide it would be what... 300 million? I could be way off, but if so, this is hardly a rare disease.
Anyway, I'll be back as often as I can-- hope to someday actually contribute something worthwhile.
Posted: Wed Aug 17, 2005 10:01 pm
Hawkman
Michael wrote:
Anyway, I'll be back as often as I can-- hope to someday actually contribute something worthwhile.
Michael, you already did contribute something worthwhile. I hate it that you are numbered among the 3% to 9% affected by Peyronies Disease but like you, I am glad you found us.
There is a "History" topic with some of our profiles so you can have a little better idea of who we are and our Peyronies Disease background. Feel free to begin working on your history there if you like. You can edit it and add to it as you like. Also feel free to post anywhere on this forum and discuss any thing or ask any questions on your mind.
See you on the forum.
You guys are the greatest!
I am truly moved at the community that the faithful members of this forum have put together. Reading the posts yesterday is all it would ever take to make Joshua and myself willing to do whatever it requires to give you a the best we can come up with. The forum atmosphere here is truly one of a bunch of good friends sitting around, relaxed with the idea of freely discussing any concern or issue, and showing a real interest in each other. It takes no more than this to make us feel indebted to a decent bunch of people and glad to be a part of the group.
I want to tell you guys that Hawk is so dedicated to this forum that it is scary! I can log on almost anytime and he is online. He really cares about this forum and takes his work on it very serious. He does not make a cent off of it and actually has cost him money. I think it is the best Peyronies Disease forum around and it will only get better and bigger. I have not found a forum that is even close simply because of the dedication and respect Hawk has for the forum and its members. His dedication to this project got me excited and involved. I am very busy but when I see what hawk does it makes me make time for a very important cause.
Thanks Hawk for your dedication to this forum!
Your friend,
Joshua
Thank you for the kind words that we have seen here and on other forums. I will share a guarded piece of my personality with you. Public praise tends to embarrass me and leave me feeling awkward. For some reason, I actually deal with public criticism better. Probably because I have a lot more practice with it. :D I thank Joshua and all of you. There are somethings, among some people, that don't have to be expressed. It is very clear to me that this forum is appreciated. Hopefully it is just as clear that I appreciate the members. Most clear is that it is ours. We each played a part and kept our promises to each other.
Since I am feeling a bit corny, I will say that it was as if it was meant to be. A lot of essential factors clicked with the right timing to make this work. Many of the so-called bumps in the road, actually helped bring us here. One of the many necessary things that clicked was Joshua. If there had been two of me, we would have still been one man short. Not only did he fill that gap, he has become a true friend.
I could not be more cranked up that the Peyronies Disease community is getting so much benefit from this undertaking. Yesterday we had 29 Peyronies Disease related posts with nothing but respect and a helpful attitude displayed to the other members of our forum. Twenty nine on-topic posts in one day is note worthy for a long established forum of any size. In fact, I have never seen half this number close to being approached by a Peyronies Disease forum. This success means that there will be posts Joshua and I may never see. With this group, that represents success and not a problem because this forum is set up to be member moderated and we have the caliber of members that will make it work. This is exactly how a forum should operate . I encourage every member to acquaint themselves with our clear guidelines in the "Read Me First" section of the forum. We designed these guidelines specifically to promote communication on all aspects of Peyronie's Disease, not to restrict communication. It is obvious that these guidelines serve us well. In the unlikely event an element creeps in that could interfere with communication. I have faith that the members will self-correct the problem and keep their forum in order as they would their home. We have all been there and seen the consequences of straying far in either direction from these guidelines. In the unlikely event you need assistance, just ask for it by clicking on the "report to moderator"link at the bottom right of every post. It takes no more than a few seconds.
Carry On
Hey Hawk, on was on that other site and saw the post bellow. I must be blind because I dont see this thread.
Date: 8/23/2005 8:36:33 PM
Name: Hawkmaster
www.peyroniesforum.net has the report and photos showing a before and after cured penis
Well Nick, I'm not sure how much of a sense of humor you have but I sense you don't offend easily. I will only say, if you spend your time looking for things mentioned on that site, it will make the search for big foot look like a sound rational use of you time. :D
There are about 400 imposter posts made with my name alone on that site.
Also, we have many new members and it may bare repeating that :I have not posted on that site as Hawk or Hawkman for over a month and will only post there as "admin PeyroniesForum.net"
And that would be why I could not find anything. It seemed like a sad childish attempt to discredit or something. So are you saying that if we find Bigfoot then we'll find the cure for Peyronies Disease :-) I'll start looking.
I don't know about the cure for Peyronies Disease, but I think he has those photos. ;)
Anyone know of any open trials of Peyronies Disease treatments? I was hoping to find a trial on iontophoresis as a means of adminstering Verapamil, but the one Dr I know of who was doing these trials doesn't have any openings. Does anyone know of any open trials?
As some of you may know, our very good and dear friend Old Man and his wife live in Mobile, AL, an area hit hard by Katrina this past Monday. I would ask all to keep his welfare and that of his family in our thoughts and prayers. I would also add the same thought for the people living in the area of extreme devastation just south of Mobile and on to New Orleans and beyond.
Larry H
With out doubt, best wishes to them all. Hope all is well Old Man.
I have an idea for another topic or thread or however you guys want to do it. What about the idea of different members posting pics . One from looking down and one from the side. It may be interesting for member to have a comparison. Or new guys could see what to expect. I myself would be willing to. I think most of us are beyond shame and would be willing to for the good of us all.
Quote from: Larry H on August 30, 2005, 04:12:06 PM
As some of you may know, our very good and dear friend Old Man and his wife live in Mobile, AL, an area hit hard by Katrina this past Monday. I would ask all to keep his welfare and that of his family in our thoughts and prayers. I would also add the same thought for the people living in the area of extreme devastation just south of Mobile and on to New Orleans and beyond.
Larry H
Larry, that is a very appropriate request. I sent him an email expressing similar sentiments and urging him to error on the side of caution. I told him we would all anxiously await his appearance on the forum signalling all is well. I am left wondering if he got the email or if he was so busy preparing that it is still waiting on him.
In addition to Old Man, there is another that needs our thoughts, Dr. Wayne Hellstrom, one of our (APDA) Medical Advisors is in New Orleans and is on staff at Tulane Univ Hosp. He just contributed to the Q&A on our site last month. The situation at the hospital is very critical and we have no way of knowing what is happening and probably won't know for some time. So heartfelt thoughts for all those affected by this disaster would be greatly appreciated.
Thanks Gentlemen,
Marti
Update for all concerned:
The Old Man and his wife Carol came through Hurricane Katrina with flying colors! We suffered only minor landscape damage. Tree limbs, loads of leaves from everywhere, but fortunately no structural damage. Maybe some loose shingles and minor roof damage, but we were very lucky in all respects. Compared to other parts of Southwest Alabama, Coastal Mississippi and last of all, but not least New Orleans and other inland cities of LA and MS, we fared very well. It is very hard to put in words what it is like riding out 90 to 100 plus mile per hour winds, tornadoes, heavy rain and the rising tide along with the storm surge with the tide. However, I live several feet above sea level on a knoll which affords much protection from rising waters and flooding conditions.
Many thanks to all for your prayers and concern during this very, very devastating storm. I believe that it will go done in history as one of the worst to hit the Gulf Coast area in all times. Mainly because of the loss of life, property and infrastructure all over the Gulf Coast area.
Again, thanks for all of your concern.
Sincerely, Old Man
Within the last week I have developed a small (slightly less than pea sized) nodule underneath the skin of my right shoulder. It is slightly sore upon manipulation and somewhat mobile. Also sort of muscle-like in texture and is visible by the naked eye.
In the past two months I have been carrying an excessively heavy briefcase to work (I dont need to anymore..) and I wonder if this could be related?
My reason for posting this here is that the nodules are often the results of fibroblast buildup... not unlike Peyronies Disease and DP.
Has anyone else had any of these nodules?
TS.
P.S. For those of you who dont know... I started experiencing some penile pain about 6 months ago after prolonged sex. No curve. Dr. Mulhall 2 months ago said he did not detect Peyronies Disease...but did notice some "thickening of the top and bottom of the penis". I have noticed tendon like things on the lower top of the shaft that I dont remember being there before onset... I also have a small painful vein like thing that runs down and across the shaft...which is my only source of pain now...
It's called "frozen shoulder" it is in the same family as Peyronies Disease. My understanding is that frozen shoulder is more responsive to therapy than the others. Try to google :frozen shoulder for more info.
Thanks for the reply.
I have read up on frozen shoulder and it seems to imply a limited range of motion...which I dont have a problem with. Also a great amount of pain, which again I dont have.
My only symptom is the nodule... although perhaps this is the early stages of it?
Yes, it may be an early stage. Good Luck and please keep us posted. I hope it is just a muscle knot and not the start of frozen shoulder.
Quote from: ThisSux on September 05, 2005, 02:45:26 AM
Within the last week I have developed a small (slightly less than pea sized) nodule underneath the skin of my right shoulder. It is slightly sore upon manipulation and somewhat mobile. Also sort of muscle-like in texture and is visible by the naked eye.
TS, of course you are going to see a doctor. Hopefully that will give you an answer. I have watched two subcutaneous fatty cysts cut from the back and shoulder of two family members. They were much as you describe the lump you have. Obviously there are probably at least 50 other thing it could be.
Let us know!
Yes I am definitely going to a Dr. Unfortunately there is a hiccup in my insurance coverage (job change) and I can't go for about a week or so.
I am monitoring it in the meantime.
my penis has been curved to the left side for as long as I can remember, but never had painful erections. Is this still considered as peyronie's disease?
Also, what is considered as excessive curvature? Would having a penis like the shape of a banana considered excessive? Or would excessive be considered as those penises that bend close to a 90 degree angle?
My two cents:
I was born with a 'banana' - a downward shaped one, and no, it was never considered a big deal. Most of these sites get a fair number of questions of this type. There are curvatures that are congenital and there are ones that suddenly show up, owing to Peyronies Disease and (I think) a couple of other disorders.
Lucky me, I now have both.
I never took a protractor to my congenital curvature so I couldn't really say how much exactly it drooped. I never thought twice about it until I was 13 and my cousin informed me that it was a bit abnormal. Nobody else ever said a word about it and a urologist once told me not to worry about it. I was quite content with it; so was my wife, not to mention a couple of girls from my long years as a single guy.
Now a lateral bend is an entirely different matter. Mind showed up about a year ago along with all the other Peyronies Disease symptoms (pain, a plaque, a thinning or 'waisting' right at the bend point, have a fair amount of difficulty with penetration during intercourse, and the all-time favorite, a one-inch penile shortening).
If your curve has been around for as long as you can remember, and there's no other symptoms associated with it, chances are it's not Peyronies Disease and it's not a problem.
Crazymoose5000,
Bob seems to have hit the nail on the head. With that having been said please allow me to elaborate on a few other issues.
Congenital means that you were born with a penile curvature. From the views of doctors and those with personal knowledge, excessive curvature would be when vaginal penetration is no longer possible, or is possible but with pain.
I had a 50 plus curve to the left in the beginning years of Peyronies Disease but penetration was not impossible and not painful to my wife or me. However, I now have a 60-degree curve looking right up at me. This is "excessive" for my wife due to pain. Something that is rarely mentioned is the type of curve that we have. For example, mine is sudden just past the halfway mark of my shaft. Others are 60 degree but extend the entire length of the shaft. Big difference I'm sure you can see. I hope I was of help to you.
Barry
okay, so now I'm guessing that I don't have peyronie's disease. But I've had this curvature atleast since I was a teenager... and now I'm 27.... so is this going away and is it worth getting fixed? A lot of what I read on Peyronie websites say that treatment should happen if it's a problem in intercourse. Part of my worries stems from the fact that being a virgin and don't believe in pre-marital sex... so having to wait until marriage to find out if vaginal penetration is no longer possible, or is possible but with pain to determine if my curvature is excessive is somewhat troublesome for me. I mean, I can "almost" bend the penis straight without any major discomfort... and isn't a woman's vagina pretty flexible? So would my curvature still be a problem?
Also, what is the correct method in measuring your degree of curvature?
And just wondering... does masturbation make the curve worse? Or is this just a myth?
thanks a bunch to those that have replied. I appreciated the response.
I too had something of a curvature just naturally, for as long as I could remember. It was probably around 10-15 degrees, subjectively. From your description, you sound pretty similar to me, before I developed Peyronie's. Atleast I think I hadn't yet developed it at that point- but it is a little bit blurry. That's probably due to my sketchy understanding of the development of Peyronie's itself, though-
Your concern about the pragmatics of intercourse mirrors my own concerns. I'm not a virgin, but my condition has become acute in a period of time during which I've been abstinent- so effectively, we're in a similar boat. I think I probably can't have intercourse...that's been my conclusion after reading some of the reports of the people that seem to be in a similar boat. The biggest factor it would seem is the type of curve that you're talking about. For me, mine is approx. half way down the shaft, and then bends dramatically to the left at almost 90 degrees. If someone just had a gradual bend that started at the base of the shaft- I don't imagine it would be much of a problem.
You can subjectively approximate the degree of curvature pretty easily. I'm guessing that you're probably alright, as far as the possibility of intercourse- if you just have a congenital curve, I don't think those get too out of control, as far as degree of bend. Again, someone can correct me if I'm mistaken. If you're able to straighten it without significant discomfort- I'm pretty sure you'd be fine.
I certainly sympathize with your insecurity about not knowing whether sex would be possible. It is pretty much the theme of my existence right now. It is having a major major impact on the quality of my life and my overall psychological health.
In terms of the question about masturbation worsening it- I believe that's a myth.
Crazymoose5000
From what I read in your posts I would agree with Bob and Barry. I don't think you have a problem except for your own concern, and that's understandable. When you say you can strighten it, that to me confirms that intercourse will be no problem. And yes, the vigina can accommodate a fair amount of bend. In fact most men have some small degree of bend, very few have a penis that, when erect, is perfectly straight.
If you still have concern I suggest that you take a digital photo when erect, and let a good urologist take a look. My belief he will tell you the same thing you are hearing here. One word of caution. I would not let him/her induce an erection by injection. A healthy penis does not need that trauma.
I hope this is of some help.
My Best,
Larry H
thanks everyone.... you've put some of my worries to rest. Although a straight penis is still preferable, I don't think I would risk a decrease of erection strength and shorting of penis for an already healthy penis.
Hawk:
Did I read your update correctly on members history? You no longer have any curve and your plaque nodules have reduced to tiny bb size? Also, you are using heat. I did not know you were using heat. Please update us on your treatment.
Congrats my friend on your improvement. I am very happy for you.
Joshua
First, my condition: The degrees thing somewhat escapes me when we discus a curve spread over the length of the shaft but my estimate was about 25 degrees. It was enough that it was a distraction trying to make normal intercourse work. It was also enough to that when laying on my back that none of my penis laid against my body. I am now so close to straight that there could be no more than a SLIGHTLY perceptible downward bow, if even that. Before Peyronie's I was 10 degrees (guessing again) upward curve. I hate to complicate this but in addition, my worst downward bow was near the end of 8 months of 2 penile injections per week . Also note that since I have ED, My curve assessment is when erect from a VED or during strong nocturnal erection (trazodone) when I am only semi-conscious.
What is clear is that there is a noticeable reduction in curve and an undisputable reduction in nodule size by 2/3rds. I still have an indentation where the nodules are and loss of length and girth.
Why the change? Like always, who knows. During the period just prior to and during the improvement I was haphazard with many "remedies". Primarily I took Acetyl L-Carnitine (ACL) at 2500mg daily for over 60 days. I used the VED erratically, sometimes twice a day sometimes once a week. My only heat application has been to use my handheld waterpic shower unit and direct increasing hot water on my penis. I would make hotter every several seconds as I got used to it. When it was to the point of slight discomfort I would stretch my flaccid penis as I directed the hot water on it. (It helps to have 2 or 3 people helping you with this :D ) I am sure I only did this for 7 or 8 minutes after every shower but I used HOT water and my penis was warm to the touch and a bit pink for several minutes after I stopped. Sometimes I would use the VED as soon as I got out of the shower.
As you can see I am a VERY poor case study. My heat was hotter and it was every day but only for 1/4 of the time used in the study. (but it was at the end of a long warm shower.) It is enough that I intend to continue by increasing the heat duration and by stepping up the VED to 2 times per day. One will be right after the heat treatment.
Sorry to say, I have no strong recommendations from this, only a report that can be filed under "for what its worth". Is it spontaneous???
I do suspect that my Peyronies Disease is still active because at times I have some sensitivity to probing or squeezing.
PS: Strong nocturnal erections and VERY weak daytime erectins even with Viagra are beginning to irritate the hell out of me. I have enough nerve function to get good erections or I would not get them at night. I feel no perceptible apprehension or stress from sex. It is a puzzle.
There is fibrosis, and then there is inflammation. Many MDs talk about the 'inflammatory phase' of Peyronies Disease, and I think I experienced some of that. Verapamil injections can cause inflammation - one reason my uro recommended against them (his exact words were "they just cause more nflammation"). Inflammation can go away on its own - I don't think fibrosis does.
Hi guys. Im new here and i stumbled on this forum on one sleepless night doing an internet search looking for a cure. Although Im a bit let down by the fact I havent found anything conclusive, I feel there is helpful information and it's nice to know there are others experiencing something like me, and im not completely alone.
A little about me, Im in my mid 30's. I have had this disease, along with pain for about 15 years. When I was young I had the ability to have many orgasms on the same erection without losing it. Although in some ways this was a blessing, the reality is that the amount of force necessary to acheive a 3rd orgasm is high enough to cause some serious trauma if something goes wrong. I know from watching pornography that as guys we miss often. Somehow when i missed I ended up with this disease. I recall the pain at first and then going right back at it. The next few days I remember not feeling the same, and spending one night on the floor of my room because of the incredible pain i was experiencing.
I have used smokeless tobacco for years and from some of the reading i've done here i feel that it may have contributed to my succeptability to this disease. I have pain, and have had pain for a long time. Contrary to what i've read. I can remember being in so much pain on days that it affects the way I move and is at times so unbearable that I cant even think straight or complete sentences or thoughts. In fact, it's amazing to me that I have made it this far.
It's been a roller coaster ride for me as I have gotten to points where the pain is really low and the function is really good. What ultimately happens is I will get into a relationship and low and behold, I'll get hurt again. Usually the first or second time I have intercourse with a new partner. From there I lose my charisma and become depressed. Usually this spells the end of the relationship, although I have maintained some long relationships. I have lost jobs because of not wanting to interact with people or even leave the house due to the suffering from this condition. Usually there's hope though and I have a few good days to encourage me. Some full morning wood, or minimal pain. What sucks is as I've gotten older it's taken longer and longer to rebound from these traumas. Odd things like soda bottles falling off the counter can hit me just right and reaggravate everything.
I think I've done enough venting now to give back to you guys and tell you what has worked for me as I have more supplement bottles in my home than an GNC it seems. First off St. Johns wort allowed me to be in a good enough mood to keep a job for 4 years. I fear it may not be helping the actual condition and my in fact be a hindrance, but I dont know if I would have gotten this far without it. I tried lecithin and it gave me rock hard erections. I have read the science behind it and like how the phospho-lipids soften the plaque. This could be very beneficial. Unfortunately for whatever reason I did not react to this very well. I dont know if it's a contraindication w/ the st johns wort as I have experienced similar feelings with tienchi ginseng and yohimbe. Both of which were amazingly effective for creating erections. The tienchi ginseng seemed to be incredibly beneficial. Unfortunately, I cant take it because too much activity down there causes a lot more pain and makes lifeharder for me. I mention this because I believe it may help others. Back to the phospholipid theory. .. IM thinking these things may be effective if I could get off the st johns wort. I liked what I saw while using them, just couldnt deal with the mini convulsions I was experiencing. Also thought that it may have to do with all the stretching of the scar tissue really inflamming the nerves. Hard to say, but there's definitely some results from these treatments. Not sure if the good outweighs the bad. For me, anyway
i have also tried arginine. seems to lower the blood pressure too much in high doses and cause cold sores. It has some benifit. Gingko biloba. I really noticed a difference with this. One caveat though. i was noticing such a difference that I took too much and it thinned my blood to the point where it seeped through the part of my penis that inflates. This created extreme swelling and Im almost sure did extra damage. Was a big setback, but more due to irresponsibility and overzealousness than gingko being an evil thing. Needless to say, Im very cautious with this product now.
I've tried vitamin E. Didnt notice much but seemd to get a bad feeling, like my heart was working extra hard when I took a lot so I dont take it as a staple.
Im not one for going to doctors but I did once and he gave me potaba after telling me i had a normal curve. (it's not so much the curve as it is a bottleneck and pain. the bottleneck is only starting to become visible when it's fully erect now) This may have worked or had a placebo effect. Wasnt enough to keep me taking it though.
Maybe the best thing I did, which never made sense to me before was start taking advil. I take four a day now and it makes the pain much more manageable. Was a girlfriend whom I injured myself with that told me to take this. Seems to help a lot with just getting through the day.
These are all things i've done in the past. I've probably had about 25 "setbacks" in my life. I get to the point where I can be myself and have a healthy relationship, then bang, it gets unhealthy real quick.
This year, for example, I started taking eurycoma longifolia. This stuff raises your testostorone levels. Dont know if it helps or not because it causes insomnia and other things that cant be real good for the body since rest is essential for healing. On a sleepless night I explored the phospho-lipid theory further and started taking fish oil . Dont know if it helped but I feel that borage oil and evening primrose helped a lot. These also seemed to not go well w/ the st johns wort, but the reactions werent as harsh and I took the borage at night. What I found was that my penis was getting erections comparable to my younger days when my nickname from my friends was the hammer due to it's significance. Borage is a lipid, but also stimulates production of prostaglandin e1 which is very useful in the penis.
This got me to the point where I had gotten intimate with a girl who was previously a virgin in September. Well wouldnt you know it , the second time we made love I got hurt again. I turned into a total loser. (clingy, needy, not funny or upbeat) and within a week she "needed some time/space". What sucked for me is that im now in face to face sales and the same attributes that attract women are also needed to make a living. Basically, you at least have to be in a good mood. I was bummed that I lost another relationship, but more bummed that it meant months more of suffering and not being able to be myself.
Last night I had a female friend over that I had known from the past. We were alway very attracted to one another and we ended up making love. It was great but I felt like I ripped something and have pain similar to a cut inside my penis today. It seems to never stop. In fact the pain is so bad that it's every other thought as I type this.
I have tried a lot of different things and really feel there is something to the phospholipid theory. I skipped over my trials with dmso and topical lecithin. Also Shea butter fits in here. I used this as a place to vent some as this is the first moment i have sat here and let all this come out of me. Hopefully someone will find something I wrote of value because even though I havent been able to beat this thing, I have gotten to a point where i have improved, only to encounter another devastating setback, but at least most of the setbacks came while doing what we all want to do.
Im a bit spent now but I have also tried serrapeptase and nattokinase. the Serrapeptase seems to help with the pain and both seem to create a gingko-like effect in terms of thinning the blood. I have been my own human chemistry experiment for the past 10 years. It may not be the wisest thing but considering the suffering I've endured it was worth trying something, and based on some of night where i couldnt sleep and was in total agony I'd rather go down swinging than do nothing
I hope someone looks more into some of the things I've mentioned. The one route I can sayfor certain had no detriment to my penis was the borage oil. Lecithin and all of the EFA's may hold the key. Once I get to a point where less than half of my day consists of suffereing Im going to try some regimen including lecithin, tienchi ginseng, borage oil, evening primrose(made me sick, but may have merit), fish oil, healthy eating, and hopefully ridding myself of tobacco and st johns wort.
I dont know if we have any doctors here or if this is too long for most to read. I will say that I have suffered for a long time with this and although i've acheived some material things, i feel my youth and enjoyment of life has been incredibly hampered by this and every day I dream, hope and pray that there is a way to rid myself of this horrible disease once and for all.
Hope this isnt too long or that i didnt say too much, and i hope that this helps someone and you can share your experiences with some of the things I've mentioned. I also really needed to get some of that out. Thanks for listening and good luck to all.
Pete
Pete:
Don't ever worry about saying too much or composing a post that's too long. On this forum you needent ever worry about being censored.
That said, it kind of baffles me how anybody could endure constant pain for as long as you... and be presented with rampant sexual opportunities no less (my single days were never that good).... and not be under the constant care and supervision of a doctor. Find one. I know the conventional wisdom is that there isn't a whole lot of hope to be offered by the medical community - particularly, urologists. But, they might at least be able to vanquish the pain. For all you know, you have some kind of cancer. (It does happen.)
I'm very bummed that the APDA took its site offline several months ago and promised something new and improved... and it hasn't happened. Nonetheless, the site still does have a useful directory of doctors in most regions of the US. The address is www.peyroniesassoc.org.
Bob
Quote from: Larry H on September 09, 2005, 02:59:36 PM
Crazymoose5000
From what I read in your posts I would agree with Bob and Barry. I don't think you have a problem except for your own concern, and that's understandable. When you say you can strighten it, that to me confirms that intercourse will be no problem. And yes, the vigina can accommodate a fair amount of bend. In fact most men have some small degree of bend, very few have a penis that, when erect, is perfectly straight.
If you still have concern I suggest that you take a digital photo when erect, and let a good urologist take a look. My belief he will tell you the same thing you are hearing here. One word of caution. I would not let him/her induce an erection by injection. A healthy penis does not need that trauma.
I hope this is of some help.
My Best,
Larry H
Larry,
You mention not getting an erection induced by an injection. I am scheduled to see a specialist next week and he will induce an erection and do an ultrasound on me. I've had Peyronies Disease for a little over a year and developed a curvature this past June. It is about 45 degrees to the left with and upward of 20-30 from about midpoint. I still can have intercourse with my wife although it isn't as easy as it use to be. I don't have ED. I've lost some length and girth but it still works. Is getting the shot to induce erection worth it? Will it cause more damage? I guess the doc will be able to see the amount and size of my plaques.
Phil,
If you have Peyronies Disease an erection is necessary for the test, and in your case seems necessary. It didn't appear that this fellow had Peyronies Disease, and an injection is invasive and I don't think was necessary in that case.
I've had 12 verapamil injection treatments, this was about two years ago, and my condition has gotten worse. I fear that the injections may have caused additional trauma, but I really don't know for sure.
In your case, I would not be overally concerned about one injection for the test.
My Best,
Larry
I had about 80 such injections (BiMix for erections). After considering all evidence, both personal and researched, I am certain the injections caused my Peyronies Disease.
Having said that, even with 80 injections, I have light to moderate Peyronies Disease (at this point). I agree with Larry that I would not hesitate to get a single injection. They use a very fine diabetic needle. I consider them painless and I could usually self- inject without a blink. There is no muscle, so the needle goes in like hot butter.
Hawk and Larry,
Thanks for the guidance. Like you guys say, it shouldn't be a problem.
Roadblock, some of your story is familiar to me. I'm in my 50s and have Peyronies Disease along with the related conditions of Dupuytren's and Lederhose. The symptoms began with Dupuytren's around age 40. But, before any of that started, I had a moderate bend - left at the base, maybe 25 degress, which as I recall appeared aound my late 20s. I paid little attention to it and it was never a problem, just required a little steering at times, and I simply accepted it as one of the normal asymmetries and imperfections that everyone has. I suppose it could have been early onset Peyronies Disease but I doubt it - no pain, no other symptoms, and Peyronies Disease doesn't normally show up until much later in life. Curves and bends are normal, and I suspect that part of our physiology continues to change in some ways well past adolescence. No doubt it also gets traumatized and just plain sore once in a while after active use .
With all the information that's now available on the net, I get the feeling that any younger guy who notices a bend or curve may quickly jump to the conclusion that he has progressive, early-onset Peyronies Disease. Even urologists may be making that assumption. But they never actaully attempt a lab analysis of the tissue, looking for those tangled, abnormal collagen deposits and related cellular changes. So I suspect Peyronies Disease is on its way to becoming an overdiagnosed condition, like ADHD in children.
My point to you is, you may not even have Peyronies Disease - and a 25 degree bend, in itself, is not a big deal as long as the plumbing still works.
I guess I'm the latest victum of this strange thing called Peyronies Disease. In the past two weeks or so, this strange artery like thing showed up just below the head of my penis, starting on the left side and around to the top. it's about 3/4 " or so long, more evident during an erection. it does not hurt, except for one small sore/sensitive spot at the very end of this thing.
I went to the doc, and said it's Peyronies Disease, and the artery like thing is plaque. "WHAT"?.... Plaque i thought was on your teeth... How the hell does it get down there?? and WHY??...( unknown evidently ) There is no bend (yet) like most on this forum, but maybe too early in it's stages???
I'm 38, married, & white, have always had a very sexual lifestyle.. This is scaring the crap out of me, and worried it will get worst. If it does, and nothing can be done... anyone have an extra bullet?
Guess I need some input here and advise....
thanks in advance, and also for this forum!
TJR:
Hold on to your shorts my friend! Getting Peyronies Disease is not the end of the world. Believe me when I say that because I first developed Peyronies Disease at the ripe old age of 24, now 76 plus and still going strong in the sex department. Even after prostate surgery in 1995 I can still perform in the bedroom.
There are many and varied treatments that have been tried. Some work, some don't, but one just has to keep trying things to see if it does. Read all the threads on this forum that you can on the various subject matters dealing with Peyronies Disease, treatments and other items related to it.
You will find that you are now in a club that is constantly looking for some relief from this horrible mess. Some recover spontaneously and others do not, but do not despair. You can find something that helps if you seek long enough. We all know that there is no "cure" available so far, but some have found an answer for their individual cases and it possible for you too.
Hope that you can find some relief, and if there is anything the guys on this forum can do to help, just let us know.
Sincerely, Old Man
I just wanted to agree with bentley that the members of this forum sharing the burden of Peyronies Disease through discussion is great. For me, this forum has certainly made dealing with everything easier, and has lead to the discovery of new treatment options.
I want to encourage everyone, especially the new members (of which I am one) to continue to post and get involved with the discussion. Post a profile. Send a personal message. You'll feel better!
Have a wonderful New Years!
Hi All,
I have read that tamoxifen citrate (nolvadex) is a standard treatment for Peyronies Disease and this got me thinking. I know that steroid users employ nolvadex during and after steroid cycles to combat "gyno" and to restore natural testosterone production and block estrogen. As such, is it possible that Peyronies Disease could be caused by a problem with dht/testosterone/estrogen levels or the ratio of these hormones in the body?
Hi All,
I am still investigating the role of androgens or lack of them in Peyronies Disease and I came across a very interesting article. It is rather long so I will only post the conclusion and a link.
ISI Impact Factor (2003): 1.064
Editor-in-Chief
Shao-Zhen Qian,PhD,Pharmacology
-------------------------------------------------------------------------------
Effect of androgen deprivation on penile ultrastructure
Zhou-Jun SHEN1, Xie-Lai ZHOU1, Ying-Li LU2, Zhao-Dian CHEN1
1Department of Urology, First Affiliated Hospital, 2Department of Endocrinology, Sir Run Run Shaw Hospital, School of Medicine, Zhejiang University , Hangzhou 310003, China
Asian J Androl 2003 Mar; 5: 33-36
--------------------------------------------------------------------------------
Keywords: corpus cavernosum; tunica albuginea; androgens; penis; scanning electron microscopy
Abstract
Aim: To investigate the ultrastructural changes of penile corpus cavernosum and tunica albuginea in rats treated with castration or finasteride. Methods: Eighteen male Sprague-Dawley rats of nine weeks old were randomly divided into three groups with 6 rats each. Group A served as the control, Group B was castrated and Group C, treated with finasteride. Four weeks later, rats were anesthetized and blood samples obtained for the determination of serum testosterone (T) and dihydrotestosterone (DHT) levels; penile tissues were taken for scanning electron microscopy. Results: The T, free T and DHT levels in Group B and the DHT level in Group C were significantly lower than those in Group A (P<0.05). The tunica albuginea was significantly thinner in Group B than that in Group A (P<0.05), but there was no significant difference between Group C and Group A (P>0.05). Elastic fibers in the tunica albuginea of Group A were very rich and arranged regularly and undulatedly, but in Group B, most of the elastic fibers were replaced by collagenous fibers. In Group C, the tunica albuginea was mainly composed of thick and irregular-arranged collagenous fibers. In Group A, there were abundant smooth muscle fibers in the trabeculae of corpus cavernosum, but they were much less in Group C and scarce or even disappeared in Group B. In Groups B and C, the diminished/disappeared smooth muscle fibers were replaced by irregularly arranged collagenous fibers. Conclusion: In rats, androgen is essential for maintaining the normal structure of penile tunica albuginea and corpus carvenosum.
1 Introduction
Androgen is vital for the development of external genitalia in male mammals. In adult males, androgen is essential for the expression of normal libido, but seems to be not indispensable to the erectile activity [1]. We indicated that the serum testosterone (T) and free testosterone (FT) levels were significantly lower, the tunica albuginea much thinner and the penile corpus cavernosum contained less smooth muscles and more collagenous fibers in the elderly rats than in the young and middle-aged rats [2, 3]. Zhang et al [4] pointed out that castration induced apoptosis of penile corpus cavernosum in mature rats, which was prevented by T supplementation. This work suggested that the changes in androgen level might affect the morphology of the penile corpus caver-nosum, but the effect of androgen deprivation on the ultrastructure of the erectile tissue was not available so far in the literature. The present study was designed to elucidate this point in rats.
2 Materials and methods
2.1 Animals and treatment
Eighteen male Sprague-Dawley rats, 9 week old with body weight of 345¡À45 g, were purchased from the Experimental Animal Center of this University. They were randomly divided into three groups with six rats each and were maintained in a 12 h light/12 h dark animal room with free access to food and tap water. Group A served as the control, Group B was castrated and Group C, gavaged with finasteride at a dose of 4.5 mg.kg-1.day-1. Four weeks later, rats were killed by intraperitoneal injection of ketamine and phenobarbital sodium and blood samples were obtained for the determination of serum total and free testosterone (T & FT) and dihydrotest-osterone (DHT) levels with radioimmunoassay; penile tissues (tunica albuginea and corpus cavernosum) were taken from similar site for scanning electron microscopy.
2.2 Scanning electron microscopy
The penile tissues were washed with physiological saline, fixed in 2.5 % glutaraldehyde (pH 7.2~7.4) and washed three times in 0.1 mol/L phosphate buffer saline (PBS). The samples were then post-fixed in 1 % osmium tetroxide for 2 h, dehydrated in graded ethanol solutions and dried by the critical point drying method. The dried samples were then mounted on suitable carriers, coated with gold and examined under a scanning electron microscope (Leica-Stereoscan 260,UK).
2.3 Statistical analysis
Data were expressed in mean¡ÀSD and processed with statistical package of SPSS 10.0. Analysis of variance was performed with the t-test. Significance of difference was set at P<0.05.
3 Results
3.1 Androgen level
The serum concentrations of T, FT and DHT are shown in Table 1. The T, FT and DHT levels in Group B and the DHT level in Group C were significantly lower than those in Group A (P<0.05). There were no significant differences in the T and FT levels between Groups A and C (P>0.05).
Table 1. Serum T, FT and DHT levels. bP<0.05, compared with controls.
Group
n
T (nmol/L)
FT (pmol/L)
DHT (pg/mL)
A (control)
6
13.95¡À10.89
43.91¡À25.85
106.2¡À57.3
B (castrated)
6
0.79¡À0.51b
1.83¡À0.15b
48.4¡À8.6b
C (finasteride)
6
11.03¡À5.68
47.33¡À32.45
47.1¡À16.5b
3.2 Ultrastructure of tunica albuginea
The thickness of tunica albuginea was listed in Table 2. It was significantly thinner in Group B than in Group A (P<0.05), but there was no significant difference between Groups C and A (P>0.05). In Group A (Figure 1), the elastic fibers in tunica albuginea were very rich and arranged regularly and undulatedly, while in Group B (Figure 2), the elastic fibers were mostly replaced by collagenous fibers. In Group C (Figure 3), the regularly-arranged elastic fibers were not seen and replaced by thick and irregularly-arranged collagenous fibers.
Table 2. Thickness of tunica albuginea (mean¡ÀSD). bP<0.05, compared with control.
Group
n
Thickness (mm)
A (control)
6
0.16¡À0.03
B (castrated)
6
0.04¡À0.01b
C (finasteride)
6
0.14¡À0.03
Figure 1. Ultrastructures of tunica albuginea, Group A. (¡Á300)
Figure 2. Ultrastructures of tunica albuginea, Group B. (¡Á300)
Figure 3. Ultrastructures of tunica albuginea, Group C. (¡Á300)
3.3 Ultrastructure of corpus cavernosum
In Group A (Figure 4a & b), the smooth muscle fibers in the trabeculae were rich and contained a few elastic and collagenous fibers. Structure of the sinusoids was perfect and clear.
Figure 4a & b. Ultrastructures of corpus cavernosum, Group A. (a¡Á300, b¡Á900)
In Group B (Figure 5a & b), the corpus cavernosum was mainly composed of a large amount of collagenous fibers, which were thick and irregularly arranged. Smooth muscle fibers in the trabeculae were diminished or completely disappeared. The sinusoids were markedly depressed and narrowed.
Figure 5a & b. Ultrastructures of corpus cavernosum, Group B. (a¡Á300, b¡Á900)
In Group C (Figure 6a & b), the corpus cavernosum also contained a considerable amount of thick and irregularly-arranged collagenous fibers, but the degree of fibrosis was not so marked as in Group B and the types of fibrosis were different between these two groups. The sinusoids of Group C were partially depressed, but the structure of the sinusoids was still retained.
Figure 6a & b. Ultrastructures of corpus cavernosum, Group C. (a¡Á300, b¡Á900)
4 Discussion
The present study showed that in the castration animals, there were a high degree of fibrosis in the corpus cavernosum with irregularly arranged collagenous fibers and a marked decrease in smooth muscle fibers, while in the DHT-inhibited group, the corpus cavernosum contained quite an amount of thick and irregular-arranged collagenous fibers, but the degree of fibrosis was lower than that in the castration group. Results suggest that androgen is essential for the maintenance of normal ultrastructure of corpus cavernosum. Zhang et al [4] demonstrated that in mature rats, castration induced apoptosis in corpus cavernosum with the replacement of the apoptotic tissues by fibrous tissue. This may be one of the pathways through which androgen deprivation acts on corpus cavernosum. In the present study, the degree and type of corpus cavernosum fibrosis in the two groups were different, suggesting that T and DHT act on the corporal cavernosal tissues independently and differently. Finasteride can only inhibit the action of DHT, but not T on the corporal cavernosal tissue, therefore, the degree of fibrosis was less in the DHT-inhibited group than in the castration group.
The tunica albuginea of penis plays a major role in the erection mechanism. It compresses the subalbugineal venules, thus decreasing the venous outflow during erection and provides an inextensible fibrous frame for the erectile tissue of the penis [5]. In the normal control group of this study, the elastic fibers in the tunica albuginea were very rich and arranged regularly and undulatedly. In the castration group, the thickness of tunica albuginea decreased significantly and the elastic fibers were mostly replaced by collagenous fibers and in the DHT-inhibited group, the elastic fibers were replaced by disorganized and thick collagenous fibers. These results indicate that androgen is also essential for the maintenance of the normal structures of tunica albuginea.
It can be concluded that androgen is indispensable to the maintenance of normal ultrastructures of the erectile tissues. However, the interrelationship between androgen and the structure and function of the erectile tissue is not quite clear and sometimes even controversial, and further investigation is needed
http://www.asiaandro.com/1008-682X/5/33.htm
I was a bit lost on your post due to my hurry and the table structure in the middle. I did follow the link however and found it ver interesting. Thanks for the post.
PS: Just a reminder to change the "Subject" lines in your posts to something that describes your post. It helps to find things.
Also, welcome to our guest Peter
if the elastic fibers can be replaced with collegen can collegen be removed and go back to elastic fibers when hormones are back to normal?
Quote from: peter on January 14, 2006, 04:37:49 PM
if the elastic fibers can be replaced with collegen can collegen be removed and go back to elastic fibers when hormones are back to normal?
Peter,
The article seems to suggest that lack of dht can cause damage to the penile tissues(Peyronies Disease?) even without any traumatic event. It seems logical that the addition of exogenous dht via oral or transdermal means could prove effective in reversing the symptoms of Peyronies Disease and restoring healthy tissues.
I plan to consult with me doc about this article and if nothing else works then I will concoct a transdermal dht formula using dmso as a carrier and give it a shot. A word of caution though; dht in large doses can cause extreme increase in libido, agressiveness, hairloss and in some cases and enlarged prostate!
Cheers.
Hi Guys,
I have had a heap of free time lately and have been doing much research and came acroos the following:
It has been shown that fibroblasts from morphoeic lesions and also fibromatoses (such as the Dupuytren's and Peyronie's diseases), like keloidal fibroblasts, secrete increased amounts of collagen due to the largely unknown causes.
It is also demonstrated that interferon-gamma (IFN-[gamma]), interferonalpha (IFN-[alpha]), and tumor necrosis factor-alpha (TNF-[alpha]) decrease collagen synthesis by fibroblasts.
Imiquimod, a novel topical immunomodulator, is a potent inducer of IFN-[gamma], IFN-[alpha], and TNF-[alpha] and has recently been employed in the treatment of keloids.
Given that an autoimmune etiology has been proposed for morphea and that imiquimod has immunomodulatory and fibroblast-inhibitory effects, it could be reasoned that this agent may be of value in the treatment of morphea. Also, due to its fibroblast-inhibitory effect, imiquimod could be of help in the treatment of fibromatoses.
The cause of morphea is largely unknown. Research has shown that skin collagen is increased in morphoeic plaques (1), possibly due to clonal overactivity of fibroblasts (2). Fibroblasts from patients with morpheic lesions exhibited elevated type I and type III procollagen mRNA levels to account for the increased procollagen synthesis, when compared to the unaffected controls (3). The occurrence of localized morphea-like lesions in chronic graft-versus-host disease and an associattion of morphea with idiopathic thrombocytopenic purpura have led to the propasal of autoimmune etiology for this disorder. Moreover, several immunomodulators, such as calcipotriol, griseofulvin, UVA1, and PUVA have been used to treat morphea (4).
Fibromatosis is a benign fibrous tissue proliferation. Superficial fibromatoses (fascial fibromatoses) are subdivided into four types, namely, palmar (Dupuytren's), plantar, penile (Peyronie's) and knuckle pads (5). Like keloid and morphea, fibromatoses are also characterized by increased collagen synthesis (5).
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Effect of Cytokines on Fibroblasts
Interferon-gamma (IFN-[gamma]) (3,6), interferon-alpha (IFN-[alpha]) (3,7), and tumor necrosis factor-alpha (TNF-[alpha]) (8) decrease collagen synthesis by fibroblasts. The suppressive effect of interferon-alpha on procollagen mRNA levels is somewhat weaker than that of interferon-gamma (3). By contrast, transforming growth factor-beta (TGF-[beta]), platelet-derived growth factor (PDGF), and interleukin-1 (IL-1) increase collagen synthesis by fibroblasts (9,10).
Cytokine Induction by the Immunomuduator Imiquimod and the Proposal
Imiquimod, a novel topical immunomuduator, is widely used clinically for the treatment of cutaneous genital warts caused by human papillomavirus infection (11). Additionally, it has also been used in the treatment of various dermatologic disorders. It is a potent antiviral and antitumor agent in animal model as well (12). Imiquimod is a potent inducer of fibroblast-inhibiting cytokines IFN-[alpha], IFN-[gamma], and TNF-[alpha](12,13) and has recently been employed to decrease the recurrence rate of excised keloids (14). Given its immunomodulatory and fibroblast-inhibitory effects, it could be reasoned that imiquimod may be of value in the treatment of morphea. Also, due to its fibroblast-inhibitory effect, this agent could be of help in the treatment of fibromatoses.
References
http://www.findarticles.com/p/articles/mi_m0PDG/is_4_3/ai_n12417025
Interesting - I did a quick web search on imiquimod. It's a topical medication that seems to inhibit fibroblast activity and prevent scarring. Not clear whether it could do anyhing once the process has gone to its conclusion, when the fibroblasts have produced the collagen deposts that cause the problem, but obviously the author of that article thinks it's possible.
Also interesting is that the article contains the clearest statement I've seen about the linkage of Peyronie's and Dupuytren's: "Superficial fibromatoses (fascial fibromatoses) are subdivided into four types, namely, palmar (Dupuytren's), plantar, penile (Peyronie's) and knuckle pads." Lucky guy that I am, I have all 4.
I'd sure like to get ahold of some imiquimod and try some on my hands, where any adverse skin reactions would be quickly obvious and not too troubling. But it's prescription stuff.
if its collogen that is a problem will it be bad to take collegen pills.isaw it posted on another board to take coxfree . but this contains collogen.
There is a worrying aspect of Soxfan's report of 11 January, which suggests that lack of DHT can lead to the formation of collagenous fibres in the tunica.
One of the the main causes of an enlarged prostate (Benign Prostatic Hyperplasia)) is believed to be due to an excess of DHT in the prostate. The first line of defence is to prescribe Proscar (finisteride), a reductase inhibitor, which prevents the breakdown of testosterone to DHT, and so eliminates the DHT.
Since BPH is more common than Peyronies Disease, there must be millions and millions of men (especially older men) with BPH who are taking finisteride to reduce their DHT.
Similarly, many men take Rogaine (finisteride) to alleviate baldness.
can collogen be removed if dht is back to normal?
Quote from: peter on January 16, 2006, 05:09:27 PM
can collogen be removed if dht is back to normal?
Peter,
The only way to know for sure will be to try. I am soon to be 39 years old, with a full and of hair; I am except for Peyronies Disease in great shape and my prostate is fine. I am currently using the ved, natto, Thacker's formula, alcar ect., and if nothing else works then I will try dht transdermally and with dmso aply it right to the scar tissue.
I am going to do everything short of surgery to try and cure this affliction. I feel that the amount of dht needed to help repair Peyronies Disease is probably low enough so that it won't cause other problems such as hair loss and prostate trouble.
I will continue to do my research and if the members here are interested then I will keep everyone updated. I have also learned that the lack of libido caused by some anti-depressants is also related to compromised dht levels. I would suggest that everyone with Peyronies Disease get their dht levels tested and even if your levels are in the low-normal range than that would help to confirm the link.
I am getting more hopeful about finding a cure for this condition so I would encourage all to not give up hope!
Cheers.
thanks for the reply. i am going to get my levels checked. i wonder how many people have gotten their hormones checked after Peyronies Disease. it would be interesting to see if there is a conection
Hi All,
I am becoming convinced that application of transdermal dht will help to repair penile tissue and shock those tissues into a repair/regrowth cycle!
Department of Urology, Yonsei University College of Medicine, Seoul, Korea.
To investigate the efficacy of transdermal dihydrotestosterone therapy on 22 patients with microphallus, we applied dihydrotestosterone gel for 8 weeks to the external genitalia at daily doses of 12.5 mg. and 25 mg. for ages less than and older than 10 years, respectively. All patients were evaluated for penile and prostatic growth, pituitary-gonadal axis function, serum sex hormone binding globulin, lipid metabolism, hepatotoxicity, bone age and height velocity. All patients demonstrated growth of the penis during treatment. The mean increase rate (153%) in the first 4 weeks of treatment was higher than that (118%) of the second 4 weeks. Of importance is that responses were noted in 4 patients who had failed testosterone therapy for microphallus. The pituitary-gonadal axis was transiently suppressed during treatment, and serum sex hormone binding globulin and lipid metabolism were transiently affected during treatment. Serum alkaline phosphatase increased, mainly due to change of bone isoenzyme but bone ages and mean height velocity were not significantly affected. In conclusion, transdermal dihydrotestosterone therapy is an effective and relatively safe modality in the treatment of microphallus.
PMID: 8326617 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&list_uids=8326617&dopt=Abstract
Cheers. ;D
hi, i am new to messaging on this forum although i have been reading posts on here for a few months.
im 19 and have an upwards curve of around 80 degrees. im determined it's not peyronies disease since there is no calcified lump, if thats what it's called. It seems like it is getting gradually worse though, and ive had it for as long as i can remember having erections. The one thing i remember from my initial stages of puberty was that i jacked off differently to how most people would. if you can imagine taking a condom off with your thumb on the top of the penis and fingertips on the underside and 'rubbing' up and down like that. i thought that might have something to do with why its curved, since i was probably bending it upwards due to my age.
I think i read somewhere that what i have might be a 'congenital curve' so i guess i'm just trying to figure out whats wrong with it, and if theres anything that can be done to straighten it out. ive tried vitamin E for about a year, but it doesnt work.
Is there anyone else on here with a similar condition? if there is, i have an apointment with a GP soon and will post any useful info i receive on here. Is it a good idea to take pictures to my GP or just tell them about it first? thanks a lot.
goldblade3:
From the description that you gave in your post, there is a possibility that you do have symptoms on Peyronies Disease. Most GPs have not had enough background in treating Peyronies Disease to fully understand the characteristics of it. Since your curve had been with you for quite some time now and you are only 19, you must get professional help as soon as possible. Don't delay. When you visit the GP ask him to refer you to a good urologist who is well experienced in Peyronies Disease.
You owe to yourself to get the best help possible since you have your whole life ahead of you. I know, because my Peyronies Disease developed at the early age of 24. Treatment for mine was much varied since in the 1950s few doctors even knew what Peyronies Disease was much less how to treat.
Bottom line, get professional help as soon as possible. The guys of this forum have all been through this crazy mess, tried varied treatments, but so far there seems to be no definitive treatment. Each case of Peyronies Disease is totally different from any other. If we can help in any way, feel free to call upon us at any time.
Sincerely, Old Man
Hi, I was wondering if anyone's physician has tried interferon treatment with them.....my urologist plans to start me on it in the next few weeks.
Thanks,
cajunot
cajunot,
If you wouldn't mind, please define or explain for some of us (or for myself) exactly how interferon will be administered in your treatment of Peyronie's and what your Dr explained/recommended/described as far as the treatment process and the expected results. I for one am unfamiliar with this treatment as it relates to Peyronies Disease. Your input and information would be appreciated.
Hey,
I will have to admit ignorance here, I was hoping someone could give me some info.
I do know that it will be injected in the manner verapimil is injected. My new doctor is the head of Tulane Hospital's Urology clinic. He was origionally seeing me for low sperm count (my wife and I are trying to have a baby). I noticed on his card that he specializes in the treatment of peyronies.
He examined me and felt that more improvement could be had with interferon injections.
Usually I look more into this....no real good reason why I haven't (except been running with work). My curve is not bad, but the last inch of my penis does not harden much when erect. This causes occasions of pain for my spouse during intercourse.
I guess I will try the next step ..... doing a google search:)
Cajunot,
I will respond just so you know we welcome you and are not ignoring your question. I know from the tons of information i have processed that interferon is or has been used as a Peyronies Disease treatment. The problem is that in my time on the forums I have never known a patient to recieve that treatment or a doctor to recommend it. Hopefully others know interferon's place in the treatment arena. Since i am familiar with what the best known Peyronies Disease doctors prescribe I am leery. Verapamil seems to be the drug of choice for injection and its track record is not impressive to me. I would consider a few less invasive means prior to any type of injections.
hawk
No problem Hawk.
I did look up some info and (of course) conflicting results were shown for both verapamil and interferon injections. I saw that subjective results of 76% improvement were noted by verapamil improvements, but looking in urology journals, it seems that when they look at increased blood flow around the leisons (which means decreased plaque) the results were more like 22% improvement.
You are correct in that verapamil is the most populare form of injections for peyronies. I went through the injections and had improvement. I think that is why this doctor wants to attempt interferon injections.
Here is a short blurp on a reasearch:
Combined intralesional interferon alpha 2B and oral vitamin E in the treatment of Peyronie's disease.
Novak TE, Bryan W, Templeton L, Sikka S, Hellstrom WJ
Urological Residency Program, Walter Reed Medical Center, Washington, DC, USA.
[Medline record in process]
It has been recently reported that intralesional therapy with alpha interferon 2B resulted in significant improvement of both objective and subjective complaints (penile curvature, pain, plaque size, sexual function) associated with Peyronie's disease. Vitamin E, with its antioxidant properties, may play a role in reducing the inflammatory response. This study was designed to determine the safety and effectiveness of a high dose of alpha INF-2B injected weekly into the Peyronie's plaque combined with oral Vitamin E therapy. Twenty-nine patients with Peyronie's disease were evaluated with penile duplex Doppler for degree of penile curvature, deformity, and plaque size both prior to and after treatment. Each patient then received 4.0 x 10(6) units of alpha INF-2B in 10 cc of normal saline after appropriate local anesthesia. Injections were given once per week directly into the Peyronie's plaque for a period of 10 weeks. Patients also received 400 units of Vitamin E by mouth twice a day. Subjective data was obtained via a questionnaire prior to and at the conclusion of the study. Preliminary results demonstrated improvement of penile curvature in 39% of patients, with one patient experiencing complete resolution. Significant decreases in plaque sizes were noted in 11 of these patients, with softening of the plaques noted in all patients completing the study. Seven patients dropped out of the study prior to completing the 10 weeks: three with severe disease proceeded to surgery, two were lost to follow-up, one had exascerbation of his arthritis symptoms, and one quit secondary to flu-like symptoms. Subjective data from questionnaires revealed improvement in sexual function in those men with decreased curvature and plaque size. Weekly intralesional injections with 4.0 x 10(6) units improved plaque consistency and decreased curvature and plaque size (P < 0.5). Overall subjective sexual performance was reportedly improved. Increased dosage of alpha INF-2B resulted in increased severity of flu-like symptoms when compared to the lower (1 x 10(6) units) biweekly dosage. No significant difference was noted with the addition of oral Vitamin E therapy.
I am leaning toward trying the injections. My previous urologist wanted to try verapamil injections again, but the previous treatments didn't seem to have any effect on the distial nodule that is making the last portion of my penis ger errect. The only reason I am considering interferon is that it would be applied by Dr. Sikka and overseen by Dr Hellsrom (the last two doctors in the above article).
If I pursue this, I'll update everyone.
A few reports can be read on the net from some using Aldara topical ointment to reduce/attack dupuytren nodules and some have suggested it might/could also be used on the penis to also reduce peyronies nodules.
We may want to look into this..
_____________________________________________________________
Imiquimod: a potential weapon against Dupuytren contracture.
Namazi H.
Department of Orthopaedic Surgery, Shiraz University of Medical Sciences, Chamran Hospital, Iran. namazih@sums.ac.ir
Dupuytren disease is a proliferative fibroplasia of the subcutaneous palmar tissue, occurring in the form of nodular and cords. Evidence is certainly accumulating for raised levels in Dupuytren's tissue of growth factors known to stimulate fibroblasts, Interleukin-1, basic fibroblast growth factor, transforming growth factor-beta, prostaglandin-F2, prostaglandin-E2, platelet derived growth factor and connective tissue growth factor have been suggested to have a role. Immune modification of profibrotic cytokines would provide a novel means to treat dupuytren contracture. Imiquimod cream 5% (Aldara) is an immune modifier, that downregulates transforming growth factor-beta and fibroblast growth factor-2 (the two most important cytokine in producing fibrosis). Based on previous mentioned evidence we suggest: imquimod as a potential drug for dupuytren contracture treatment.
also review:
http://www.emedicine.com/MED/topic3132.htm (http://www.emedicine.com/MED/topic3132.htm)
Anyone have any information on this treatment possibility? research to share etc.. I am interested in it...
I know Imiquimod cream has been used in treating keloids, specifically to stop the recurrence of keloids after they are removed surgically. Just adding that to the discussion. (Sorry if off topic :P)
dcaptain
Dcaptain,
Thanks for the reply. I am trying to locate more information.
Joshua
I have or have had Peyronies Disease, Dupuytren's Disease, and frozen shoulders (adhesive capsulitis). The frozen shoulders started about three years ago (right) and one and a half years ago (left). Three years ago a doctor told me my prostate was a little large but nothing to worry about. Last year I went to another doctor for an unrelated problem and the doctor said I should have a physical. This included the dreaded DRE. He found a "nodule" and found my PSA at 3.5 (I was 47 YO at the time). Long story short, I was scheduling prostate surgery within a few weeks. The night before I went to the urologist for the first time. I noticed a small "knot" in my penis. The doc said it Peyronies Disease but we had more important matters to deal with. Now. ten months post op, my Peyronies Disease is much worse (thank God and my surgeon the cancer is gone). To top things off, I saw the Orthopedic doctor who did the shoulders about more shoulder problems and a small "knot" in the palm of my right hand.
All that for two questions. Are the any studies about possible relations in these conditions? Seems to be on the surface. Also, are there any other related condtions I should be aware of? I'm getting tired of surprises.
Liam,
Welcome to the forum and a salute for already becoming an active member.
You have indeed had a some bad breaks. You are correct that there is commonality between these diseases and a genetic component as well. If you go to "Developmental Treatments" https://www.peyroniesforum.net/index.php/topic,36.0.html
you will find several posts with links that discuss the genetic component. It starts with post number # 17
You can also go to forum search and search: DP, Dupuytren, etc We have several members here that have 2 or 3 of these conditions.
Or 5 in my case. Dupuytren's, Peyronie's, Lederhose, Frozen Shoulder, Garrod's knuckles. I was able to correct the frozen shoulder by physical therapy; the knuckle pads are harmless; Lederhose is minor in my case; 2 nasty surgeries for Dupuytren's.
As a group they're sometimes referred to as the 'superficial fibromatoses' - Google will find information on that term.
A genetic marker for Dupuytren's has been identified, at least in the Northern European population.
http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=104&STORY=/www/story/10-13-2005/0004167642&EDATE=
It seems likely that the other conditions are, or can be, genetically linked as well.
It seems to me that such a conglomeration of events has to be related to a "signal" to switch on of some sort. Whether this is genetic, or a systemic response to a circulating factor of some sort, or both, is unclear. It seems we cannot invoke some sort of local "trauma" mechanism for such different anatomic lesions all showing up at the same time.
Something changed in those of us who have more than one lesion (I have extremely mild DC) - and that, in turn, suggests that a systemic therapy might be of more value (systemic means a medicine that works everywhere, not a "local" therapy, like VED or verapamil).
The question is - what therapy?
Tim
Tim468 - what about an 'antifibrotic'?
The answer, in my opinion, won't come from urologists, but from someone working on DC, or IPF, or Desmoid tumors. There's more research going on in those areas and it's aimed directly at the problem. Any medical discussion of Peyronie's seems to wander off into blood circulation and ED.
But, I don't think we're likely to get a systemic answer in time to do us much good. As with DC, I'm hoping for a mechanical solution - other than surgery. Some way to stretch, elasticize or break up the fibrotic tissue.
J, I've see photos of DC surgery. Looks like they use a chainsaw. I'm hoping mine never advances to that point.
The frozen shoulder treatment was not bad. Forget therapy. Manipulation under anesthesia (MUA) is the way to go. They knock you out and rip the adhesions loose like pulling apart Velcro. No cutting. Had both shoulders done (different times) and could rotate my arm in recovery.
I wish it were so easy for the Peyronies Disease.
Tim, I was looking for something about a systemic approach to the problem. I am very interested in Pentox. I plan to ask my Uro about it along with 25 mg Viagra at bedtime. It will not hurt the ED I am experiencing since the prostatectomy (RRP).
I have done a bit of reading on the subject of ED after RRP. Nerve sparing techniques are not a guarentee of regaining erectile function. Some suspect a "blood flow" problem. Some suspect a "blood flow" problem related with Peyronies Disease.
That said, I'm ready to do something to start them red juices flowing.
I know its not that simple, but....
Hey all!
Laim, hang in there. You sure have a lot of different issures to deal with, and it is only natural to feel that there may be a systemic answer to your difficulties. I hope this is so, because it makes things a little simpler. But while there may be a direct connection between Duypetrines and Peyronies, the other conditions may or may not be directly connected. Kind of like getting a bad case of bronchittis after getting a really bad cold. The cold virus weaks the immune system and lets bacteria set in to cause bronchitus or pneumonia. Peyronies may have weakened your fibrous tissue in your shoulder which led to your frozen shoulder. Just a theory, not necessarily fact.
Also, don't knock out therapy for your frozen shoulder after the releases you undergo. It can reduce the reaccurance rates...of course, being a therapist, I may be a little biased.
I just wanted to update everyone on my physician's use of interferon on peyronies. Yesterday I underwent my first of 10 injections. I forgot how fun they could be (I had the verapimil injections 2 years ago). Dr. Hellstrom told me that interferon works basically the same way verapimil does, however, interferon is a much stronger anti-inflammitory. He also feels that it may have a greater effect on the bottlenecking of my penis.
One thing stood out. He said my plaque was soft. The physician who used verapimil on me only commented on the calcified nodules that formed, not the soft plaque. Well, what I inferred from this is that different physicians can sense the plaque more aqutely and may have better success at treating it, so if your physician isn't getting good results, you might want to try another.
Oh, unlike verapimil, interferron has some not-so-fun side affects. He warned me I might develope flu-like symptoms....and I sure did...last night I had a weard case of chills and hot flashes.....they didn't last, but I expected just achyness and nausea.....
I'll keep everyone updated as the treatment progresses.....
Kenm,
I read your history and want to welcome you as a contributing member and thank you for your post. I am very interested in why you waited so many months to post. It may give some idea as to why others avoid posting.
Thanks Again
Hawk
Because about six years ago I got myself involved in another discussion group on another off beat medical topic that got pretty consuming so I didnt want to do it again. Ever heard of BFS or benign fasciculation syndrome. A lot of people who have BFS are doctors. BFS is a syndrome in which people fasciculate. The concern is that when you look up in basic medical textbook what fasciculation means the first thing you come across is ALS or Lou Gehrigs disease. Ah the death sentence. The end of the career. The end of life as we know it. One of the worst diseases there is. Well people fasciculate and then they go on chat rooms and discuss. Massachusetts General Hospital has a great chat room on this topic. After a while you realize that you dont have ALS but this funny thing BFS--It usually takes a couple of EMG's and a lot of angst before you are convinced. There was actually a trip to Vegas by the BFSers. Well that is the story.
Well Ken, I am willing to bet big bucks that past experiences associated with fasciculation syndrome are not likely to be why other members hesitate to post. So much for my theory on that ;). It was a very clear and interesting explanation however. I hope you have made some headway with that even if it was only learning to take it in stride.
You seem to have a clear head with lots to contribute so I am glad you spoke up. It is always great to get to know one of our silent brothers. I certainly don't want this forum to become an obscession with you. Maybe I can do an intervention and boot you off if it gets out of hand. Only kidding :D
take care and see you around.
Ken, we'll all keep an eye that you don't become obsessed with us. :D :D :D Welcome aboard and please, post and share with the rest of us. We're all in "this" together.
Hey guys,
I know I saw at least one post of a guy who was doing injections of interferon. Is that guy seeing any results or sucess? I'm wondering though what is the difference between interferon and collagenese as I saw this atricle online.
"Interferon: The use of these naturally-occurring antiviral, antiproliferative and anti-tumorigenic glycoproteins to treat Peyronie's disease was born out of experiments demonstrating the antifibrotic effect on skin cells of two different disorders — keloids, overgrowth of collagenous scar tissue and scleroderma, a rare autoimmune disease affecting the body's connective tissue. In addition to inhibiting proliferation of fibroblast cells, interferons, such as alpha-2b, also stimulate collagenase, which breaks down collagen and scar tissue. Several uncontrolled studies have demonstrated intralesional interferon's effectiveness in reducing penile pain, curvature and plaque size while improving some sexual function. A current multi-institutional, placebo-controlled trial will hopefully answer many of the questions about intralesional therapy in the near future."
Does anyone know what "current multi-institutional, placebo-controlled trial"they are talking about?
ComeBackid
As I recall from my research, interferon has been shown to be about as effective as verapimil. The only problem is that interferon also comes with some significant post injection side effects...that's why most doctors elect to use verapimil. However, I think someone on the board is currently going through the interferon injections. I'm sure he can provide more information.
I received my first interferon injection two weeks ago....I go for my next one tomorrow morning. Not really looking forward to it. The injection procedure is just like verapimil injections (and just as enjoyable). The side effects are similar to the flu. The side-effects only last a day or so, so it isn't unbearable if it brings some success.
Not real noticable effects yet. But I'll keep everyone updated.
Thanks for the post. I am anxious to know what happens. The side effects sound bad for a local injection. I, too, would put up with it for results.
Good luck.
Liam
Does anyone else here notice that in the flaccid state their plaque or penis is hard, and when achieving an erection the erection is realy hard on the sides, harder than then normal corpus cavernosum would get? I've noticed this, it seems like there is a halfpiece of a hose cut out and place on each side of my penis and is hard and non flexible, when flaccid and erect, it feels like the plaque is hard like that and goes all the way around my penis. I hear a lot of people talking about plaques the size of peas and what not and wondered how many others have this plaque that seems to go all around their penis like a halfpiece of a hose pleaced on each side?
ComeBackid
Has anyone besides me had trouble getting coverage for their verapamil or other drugs? I went through MEDCO for my prescriptions and they strung me out for weeks sending me letters denying my claim for reasons that were simply invalid, in fact one of them stated " your plan doesn't cover this medication," after they just payed out for it the previous month! They are still denying my claims and not paying out, there customer service member representatives have been miserable and just lie to me on the phone. I've spent the past month trying to get my 3 month supply of topical verapamil covered and they simply won't pay out, its disgusting. Has any of you guys had problems like this of being strung out for weeks and getting your claims denied for dumb reasons?
ComeBackid
ComeBackid:
I know of quite a few guys whose insurance won't pay a dime on any kind of ED or Peyronies Disease medications. Some companies will pay any and all costs. Why the differences, I don't have a clue, who knows!
My personal government health insurance paid for all my ED and Peyronies Disease drugs until the 31st of December one year and thereafter have included a statement in their coverage plan that these drugs are positively not covered by their plan (government - civil service service plan).
Old Man
I will never again choose a health insurance plan that uses MEDCO. There representatives are miserable, they lied to me mutliple times, strung me out for a month, and finally won't pay my claims. It is yet again big business in America taking advantage of the little guy who plays by the rules and pays their ridiculously high monthly premiums everytime for years. Medco is shameful and unamerican, what a disgrace.
ComeBackid
Insurance companies are bottom feeding leeches. When my wife got Cancer they tried to play the "no pay that" game but in the end we got every dime. She has finished chemo and will soon start radiation therapy so they still have time to try, but they will pay out one way or the other, we just have to be persistant. Refusing to pay out is just a game they play.
Best to All
BF
pudder135, I also had MEDCO and they paid nothing for my TV.
Easterling has us over a barrel because he refuses to license his patented formula to other pharmacies, and PDL isn't a MEDCO network provider. I sent MEDCO a letter pointing out that this medication is patented and available from only one source - but no dice.
I'm challenging their denial to pay my claim and taking them on, they paid for one months of it they paid out a pathetic $94 for the $270 tube, now they wont pay my three month supply for $700. I"m writing letters to my plan group that chose them, and MEDCO appeals headquarters. I've called in at least 7 times and filed verbal complaints and ripped their supervisor for lieing to me. They are liars and thieves and will cut and run with your cash. They will do anything they can to deny paying out. I will fight them and re-appeal endlessly. I will continue to file complaints until they pay even if it takes months.
ComeBackid
I have Horizon Blue Cross Blue Shield of New Jersey and they paid about 57% of my TV prescription. (Approx. $400.00 out of the $700.00 bill) When I called them to see if they would pay they told me that as long as one of the NDC numbers are in the compounding drug it would be covered by a certain percentage. The verapamil NDC number was in the plan so it cover it.
Fighter,
I bet you haven't seen any results from the TV just like me and zigwyth... and we were on this forum before we started using TV, we aren't people that didn't "move on" after the so called drug cured them.
I bet your balls are burning like hell as you type...
ComeBackid
I like that Liam! Now that was funny!
Okay, I had my second go round with interferon injections yesterday. It was much less painful than the first go round. This time it only felt like sticking ice onto a tooth needing a root canal. That was just the pain killer. The doctor called it "freezing" the penis. After that, I didn't feel the interferon injections at all.
No big side-effects this time. I took Alieve before I went and 3 more times by this morning and I feel pretty good. My penis is sore, as if an ex-girlfriend was using it as a voodoo doll, but I will live.
Really am not expecting great results yet, but hopefull for the next few months. If not, my physician has left me hopeful for things comming out in the near future. He didn't go into detail (and really I wasn't thinking of getting details as he was "freezing" me), but he said he is on the board for a company that is researching a new drug. Supposingly this drug will dissolve plaque and calcium deposits as if it were being cut out with a knife. I will remember to ask more questions in a month when he sees me again. He is on vacation in two weeks and another doctor will be applying the interferon injections then.
Oh, on a side note, if you are getting any kind of injections, have your spouse or significant other there. Great sympathy points!!!! Mine came for one of my verapimil injections and my last two interferon injections. I have the freedom to whine all I want about anything and she won't say a word :) I just tell her during the injections that I am only doing this for her :)
Anyways, no change yet except my penis looks and feels like an abused voodoo doll, but I'll keep everyone updated on what I find out and what my results are.
Everyone make sure they take the new PDS survey, it is basically about what each individual member can do to help and improve our forum. I think our administrators can alwasy use an extra hand, especially hawk who has done so much for this forum and built it from scratch! We watn to keep improving our forum as we grow so make sure everyone takes that survey!
ComeBackid
I've read and J has stated that steroids can cause tissue atrophy. Since IONO uses decadron in its mixture, which is a steroid, could this cause tissue atrophy? I read some reports online and it seems like they are talking about tissue atrophy when used via injections.
ComeBackid
Quote from: pudder135 on June 22, 2006, 06:09:54 PM
I've read and J has stated that steroids can cause tissue atrophy. Since IONO uses decadron in its mixture, which is a steroid, could this cause tissue atrophy? I read some reports online and it seems like they are talking about tissue atrophy when used via injections.
No - it won't do that.
In the category of stuff that slightly annoy me are minor typographical errors. I just went to the web site for the PDS and wanted to vent:
It is INTRA-lesional verapamil, not INTER-lesional verapamil... and
In the Verapamil results survey, there are "EFFECTS", or it could say "What was AFFECTED", but not what was "EFFECTED".
Phew! I feel much better!
Tim
Tim,
I hope the effect of your post will be to give you a more pleasant affect while reading other posts. ;)
Quote from: Tim468 on June 23, 2006, 09:42:07 AM
In the category of stuff that slightly annoy me are minor typographical errors. I just went to the web site for the PDS and wanted to vent:...
Phew! I feel much better
I feel better too Tim. That is a case in point as to why one person cannot do this alone. I have been pleading for members to proof read what I design and publish to the site for months.
Quote from: Hawk on June 20, 2006, 10:35:02 PM
Update on the survey page....
As always, let me know about typos, grammatical errors, or links that don't work. Adding one or two pages require that I modify multiple links on every page. Bad links KILL our search engine rankings for months, so notify me at once if you find them. It is difficult to design, proof read, and test, along with my other duties.
I appreciate the help and support.
Hawk.
Thanks for the proof reading help Tim, and for letting me know.
Hawk
Here is another link I hope is useful. This site contains abstracts/talks presented at American Urological Association, May 20 - 25, 2006. It requires an easy registration. The site allows you to search be author or keyword.
http://www.abstracts2view.com/aua/
Tim. Ima sory if tipografical errs piss u off. Althow I wuz 3rd Grade spellin champ,I stoped there. Hahaha. ;D Just had to do that! Pisses me off too. Anyway, ComeBackid, I thought after our discussion and your many posts of slamming PDL, that you were not going to order anymore of the TV? What gives? HOPE? ???
Zig The Twig
I didn't order anymore of the junk, I just have a tube that is mostly full that I"m goign to finish up using. The crap doesnt work at all. I think when hawk gets the TV survey up there, it will show the true colors of TV from PDLabs. And I was on this forum before I started that crap to, I"m not just here because it didn't work. Many men who PMed me where here before or while using the crap. PDLabs is full of crap and the stuff won't penetrate in deep enough to work.
ComeBackid
Guys,
Found this out of the wikipedia, a great resource for those who are doing research.
Penis Enlargment (http://en.wikipedia.org/wiki/Penis_enlargement#Traction)
Some things I found interesting from this literature.
Pills
"Penis enlargement pills" or ointments are commonly offered over the Internet; for the most part, are scams. At best, they promote blood flow to the penis in one way or another, temporarily resulting in a slightly larger erection. Herbal ingredients have included ginkgo biloba, a stimulant and vasodilator, and yohimbe, a sexual stimulant. While both of these ingredients may increase energy and sexual performance in the short term, neither is capable of increasing the length or size of the penis over time.
Jelqing & Clamping
Another method is known as jelqing (or jelquing). Jelqing is a technique intended to enlarge the penis by increasing the blood pressure in the penis, with the goal of permanently increasing the maximum erect size of the penis. This technique, also called "milking", involves wrapping the thumb and index finger around the penis while semi-erect and repeatedly drawing them away from one's body to force blood into the glans, thus encouraging more vascularity in the corpus cavernosa and associated tissues. Whether jelqing actually works or not is a subject of controversy.
The word (and technique) is rumored to have various Arabic origins (from the word "milking"); other sources claim the technique has its roots in tribal Africa (particularly Sudan); however, still other sources claim that it was an American invention and these rumors are simply rumors or propaganda meant to sell jelqing instructions. (According to wiktionary, entering جلق (jelq or jalgh) returns جلق زدن (jalgh zadan) meaning "to masturbate" in Persian. Persian and Arabic use the same basic script.) Still others maintain that this was ancient Russian tradition, practiced by midwives, and mothers for their sons early in life, as this was thought to enhance the size of the genitals. (Such techniques reportedly are the reason for Rasputin's massive organ) .Though there is a growing body of anecdotal evidence, and just one tiny non-blind study with very few participants that seem to suggest that it works, but otherwise there are no really definitive scientific studies to support the assertion or refute that this technique works, or that it is safe.
A study was performed in the late 1970s by Dr Brian Richards in the UK. It was published in the British Journal of Sexual Medicine and showed increases in 87 percent of the test subjects. Increases in penis length of up to 1.4 inches and girth of up to 1 inch were recorded.
Jelqing is inherently dangerous, and even if done correctly can cause injuries, from irritated skin and burst blood vessels to scarring and impaired penile function, including partial loss of erectile function and inability to maintain an erection. It should not be attempted by anyone without a complete understanding of the risks involved.
Traction
Another nonsurgical method to lengthen the penis is by employing devices (or one's own hands) that pull at the glans of the penis with continuous tension for extended periods of time. This is known as penis stretching or traction. If the applied tension is too large injury to the tissues or nerves of the penis can result. This is not recommended because it can forcibly tear off the vessels and other neurogical nerves thereby reducing the erectile functions of the penis.
Origins of traction can be traced back to thousands of years. Many tribes in Africa still use traction to expand certain body parts such as ears, lips and necks. Many penis enlargement companies use traction as a means of expanding one's penis. Most sites claim to produce permanent results, however, hard evidence on the accuracy of this statement still does not exist.
Transplantation
An experimental method is a complete penile transplant. With modern techniques and anti-rejection drugs, this certainly should be possible, but there has been no record of a successful attempt until very recently. An unverified report from India stated that a penis was taken from a male infant with two penes and attached to another male infant lacking a penis.[citation needed] The overwhelming drawback to this method, apart from the necessity to ever after take immunosuppression drugs, which carry numerous side effects and restrictions in lifestyle, is the unfortunate fact that, performed on an adult, there is no guarantee that significant sensation, if any, would develop in the transplanted penis. Evidence from hand transplant cases suggest that limited sensory input would be available, at best.
I hate to be a negative but, I think that some of the "natural" methods need to be approached with caution. I submit this article on pH balance for review.
http://www.quackwatch.org/01QuackeryRelatedTopics/DSH/coral2.html
Colon cleansing and liver detoxification are words that scare me. Please fully research these ideas before proceeding. If someone is selling a plan product or promoting a book, their advice should be suspect. Coffee IV, maybe; Coffee enema, never. Skepticism can be a good thing.
As a caveat, this advice is from someone who stretches and pumps his penis ::).
Liam,
I'm only into this for three months, please let me know results from ved, do you think it is too early and what are you results, thank you brother.
Rico
I have the double whammy of prostate surgery and Peyronies Disease. The VED was keeping up before the Peyronies Disease kicked in full strength. Now the two treatments are keeping up. Some of the loss I experienced has been recouped.
The 1 year anniversary of my surgery is 7/12.
Liam:
On 7/12/06, my wife and I will celebrate 43 years of marriage! Some anniversaries, huh? One year of Peyronies Disease for you and many years for us.
I too have prostate cancer with the aftermath of that and have had Peyronies Disease for over 50 years, so I know the feeling about that too.
Hope that things work for you on the Peyronies Disease circuit.
Old Man
I like your anniversary better. AWESOME!!!
Congrats to you and your young lady. :)
As far as Peyronies Disease. I feel that things have improved. I doubt I will see a cure any time soon. But, I'm learning to deal with it.
Liam,
I thought you would get a kick out of this. I read the article on the site you provided about nutrition. It list the doctor who wrote it, I thought it was a good article and wanted to read more by him. You can click on his home page. He list peyronies, He claims it is no big deal, it goes away on its own in five years. I only have 4 years and 9 months to go....Whopppeeeeeeee:)!!! Take care brother..
Rico
in that case rico i have a year to go but some how i think it will go into extra time
I agree with you English, I meant it tounge and cheek. It blows me away how some of these articles read. I mean he said " Don't worry about it, it will go away on its own in five years", Please turn in your mail order degree as a Doctor.
Rico
http://www.drmirkin.com/men/1241.html
I guess nobody is right all the time.
Here are some other links.
http://www.mayoclinic.com/health/colon-cleansing/AN00065 - colon cleansing
http://www.straightdope.com/columns/060310.html - ridding the body of toxins
Hey Guys,
I was surfing MSNBC and saw this article on stem cell research. Because there is such a promise for stem cell research to eventually cure peyronies or make our lives so much better through the study of stem cell research I thought it was important to make people aware of the debate going on in Congress.
Senate to pass stem cell bill (http://www.msnbc.msn.com/id/13903040/)
Clearly the issue is a political one for some in Congress, and while we don't really want to turn this forum into a debate on stem cell research, its almost impossible to seperate politics on this issue, which does directly apply to the treatment of peyronies, and could effect the ability to regrow corpus cavernosum tissue. I think its important people are informed about the new possibilities that are out there, especially for us younger folks. As we don't want to turn this forum into a forum to debate politics, religion, etc... I think it is important that people are informed of bills in Congress that could relate directly to the treatment of their peyronies, you can always make your statement when you go to the polls with your vote.
Another article on stem cell research (http://www.msnbc.msn.com/id/13864044/)
Stem Cell Information (http://en.wikipedia.org/wiki/Stem_cell_research)
ComeBackid
Yeah, I watched/listened to some of that debate. Everybody there seems to have their political views on the subject. There where points made on both sides of the room. I could tell however that it will not be an easy issue to solve. The politicians all know what's best for us (sic). Keep the Faith, Blink
As expected the President vetoed the stem cell expansion bill making it easier to do more critical scientific research, that someday may lead to a full cure for peyronies sufferers and so many other diseases and cancers.
http://msnbc.msn.com/id/13934199/?GT1=8307
Despite last minute pleadings from Nancy Reagan, Arnold Schwarzenegger, and even Bill Frist in the Senate Bush slashed the bill, despite its passing in the Senate and House of Representatives. Does anyone know if Ron Reagan Jr. has an organization for his stem cell support, and how one might contact him?
Another good article on this subject:
http://www.msnbc.msn.com/id/13935219/
ComeBackid
a quick thank you for helping my wife and i over the past few weeks.... :)
i'm typying with one finger after having shoulder surgery 5 days ago...
MR. BLBC
Welcome aboard. I have be pretty eagar to see you register. Also, don't expect too much sympathy for the one finger typing. I have been typing with one finger for about 25 years. :D
I do hope the shoulder healing goes well.
Hawk
Mr. BLBC,
Welcome! You mean its possible to type with 2 fingers. That reminds me, its almost time for a little toddy ;).
Seriously, we are glad you're here
Liam
Welcome, MrBLBC! So glad to have you on board.
I hope the shoulder heals up in a timely manner.
Don't worry about one finger typing... I have heard from a reliable source that Hawk, Christine and Liam do not have secret software to check our typing speed ;D
Truly.... warm welcomes to you.
Wassup
Have a look at this thread I created, some of it's a little crazy but I think I'm on to something
Read from the bottom upwards
http: //www.biospecifics.com/forum/readThread.asp?forumID=14&threadID=5038
Cheers
Link deactivated due to profanity and abusive language. If desired, it may be viewed by copying and pasting and removing the spaces.
Welcome to our forum. Your discussion regarding prostate disease and other factors correlating with Peyronies Disease has been discussed here as well (minus the profanity and juvenile behavior). I am sure you will enjoy posting your good ideas directly here in the future. They will get the respect they deserve.
Liam
Quote from: Angus on August 08, 2006, 11:26:50 PM
Welcome, MrBLBC! So glad to have you on board.
I hope the shoulder heals up in a timely manner.
Don't worry about one finger typing... I have heard from a reliable source that Hawk, Christine and Liam do not have secret software to check our typing speed ;D
Truly.... warm welcomes to you.
Hawk, Liam and Angus,
Thanks for the warm welcome.....J
I know that you've met the wife, some more than others because she very active on the ladies board......
It's not just about us guys, our partners, wifes, mates,etc deserve more.....
This is going to be an interesting journey, to be successful requires 100% from both parties.......
Maybe a topic subject.....
"What do you do to involve your other half in your health dilemma......."
Also wanted to let you all know that I told all my family including my mum.....
The more support the better.......
Mr.BLBC
Wow Mr BLBC - good work! You are so correct - getting support is a key factor to improving.
To "Carlton", I read most of the thread that you linked (the swearing does not faze me BTW), and I think that you will find here a less inflammatory and reactionary crowd, that is supportive, listens, but is also critical in their ability to think and will share alternative views with you.
Reading phrases like: "Please note that Peyronies Disease cannot happen at women nor at boys before puberty. Conclusion: it has soething to do with production of masculine hormones" reminds me of how simplistic some folks thinking is about physiology. Women do not get Peyronies Disease because it is a disorder of the penis. Boys do not "get" Peyronies Disease because they are not yet sexual beings, and so their penises may bend, but it is not seen (if at all) as a "problem". I personally have no doubt that some young boys deveop a penile angulation due to trauma, and it may in fact be seen as "just the way things are - I was born that way" when they start to get erections that mean something to them at age 11-13 or whenever.
I was young when my Peyronies Disease started (19-20), but the majority of men get it in their 5th or greater decade of life. That strongly suggests either a disease associated with aging, or with some sort of encoded cell senescence problem (specifically, the problem may be with cellular apoptosis (programmed cell death) during repair of microtrauma, allowing uncontrolled inflammatory processes to lead to progressive disease).
Although you are correct in making the correlation between stress (or the human mind in general) and illness, I think that your comments in the referenced thread are over-simplifying the physiology. It is not a black and white situation. The fact that we cannot always find a "cause" for a case of Peyronies Disease, does not mean we conjured it up. I would not begin to speculate on the role that your mind might play in your illness - I can only speak for myself. I can say that my emotional response to developing Peyronies Disease at a young age was one of panic, terror, sadness and lots of other feelings. I know that I did not "do well" with the development of Peyronies Disease. I also know that I am now a much more wise and centered man of 51 years, and I am not living in terror or panic.
But I still have Peyronies Disease.
My point is that there is a double-edged sword to making the mind-body connection the sole cause of anything. That is that one begins to blame the person for having their own illness. Frankly, telling any patient that IBS is "all in their mind" is a load of crap. But it would be true to say that it is a chronic condition that can be healed by attending to spiritual and mental health, and modifications to the diet, for many patients. But imagine how a person might feel if he or she is told that their medical problem is from their mind - it makes it their "fault". And dealing with any illness is hard enough without carrying the false impression that you somehow brought it on yourself.
Because usually, we didn't bring Peyronies Disease on ourselves - it just happened.
Finally, you have stated several times very strong feelings about the "corrupt medical establishment" - I have no idea what you mean by that, or what direct personal experiences have led you to that conclusion. But just like most doctors I know who "hate attorneys" because they are all sharks and corrupt and etc, guess who they call when they get arrested for soliciting a prostitute, or cheating on their taxes? A lawyer. And those same attorneys, who think all doctors are philandering, tax-cheating quacks (remember which doctors they get to see in the course of the daily work!)? Well guess who they call for when they have a heart attack?
Many people I have spoken to over the years have voiced a fierce disapproval of the medical establishment, but expressed great satisfaction and happiness with their own personal doctor (who is seen as "different"). My indirect experience from listening here is that many urologists are good guys, and do a pretty good job, but are either simply unaware of how, or unable to, care for Peyronies Disease. I personally went to a urologist when I was about 20, and after squeezing my penis a few times, he announced that I cuold "probably" have intercourse, if I used "lots of lubricant", and wrote me a prescription for POTABA, which I filled and took home - an enormous jar of pills I was supposed to gulp down several times a day. I never went back. I haven;t seen a urologist since - though I am going to see one soon, since I think I now need more help.
BTW, I am a doctor too. But I am one of the "good ones" ;D
Tim
Tim,
Thank you for your calm response to the thread on biospecifics. I too read the entire thread, and while not shocked with the language, I find it unnecessary. This forum is a much more comfortable place for us all to discuss our ideas, treatments, and feelings in a civilized place. I was tempted to respond to the thread with some comments that, when I thought about it, might have been seen as an attack on the Carlton-King's position, so I didn't reply. Your reply is much more balanced and in keeping with this forum's "flavor". Thanks.
Steve
ps. I've always thought that the medical 'establishment' is doing a good job...it's just that our human ailments are not an exact science--it's not "If your symptoms are A than take medicine B and you'll be cured".
Tim,
You are a great doctor. We need to set up a "Hall of Fame" and put that post in it.
Wow Mr BLBC - good work! You are so correct - getting support is a key factor to improving.
Thanks Tim.....
I also have great relationship with my doctors and pyshical therapist, it's cool that I can talk openly with people who truly want to help.....
Both of the guys that I told, my best buds, basically stuck their fingers in their ears chanting "Too much information, too much information, too much information"..... :o
Then it got kinda silent and we carried on fishing........ ::)
Mr BLBC
Mr BLBC
I applaud you for telling your friends and family. I can picture your friends with their fingers in ears...TMI TMI. Of course they didn't want to hear it. It runs too close to home, something may happen to them, someday, or it may already have- but they can't tell anyone. Who wants to know about .....Peyronies Disease..............shhhhh.
Who knows where your openness may lead.
For me, being a woman, it was very difficult to talk about Peyronies Disease to anyone. However, I can sort of relate to your experience.
I have a very close friend who has complained of the lack of affection in her marriage and physical changes in her husband, so I did what any responsible Peyronies Disease involved person would do, talked to her about it and then drug her rear to a Peyronies Disease meeting. When we left, she asked how in the world I knew about this (Peyronies Disease), so I told her. I got the TMI- TMI too. But, in the long run, she now understands the disease and has a new understanding of what her her husband has silently been going through. No, he has never seen a URO and to this day, 3 yrs later, he still does not know she went with me to that meeting. He would never admit, even to her that he has any problem.
Occasionally I get a phone call, wanting more information, and just the other day, she said that she may have talked him into finally seeing a Dr. For this macho, redneck man, that is a huge step. Fortunately, he is going to make an appt. with the Dr. we heard speak.
I tell you this so you can see an example of what your willingness to open up to others about Peyronies Disease can have. One day, someone may come to you and ask for help, and you will know exactly where to send them.
Helping others while helping ourselves.
Fantastic!!!!!
Caring, that is a great saying. I'm gonna steal it, with your permission. I believe that it would be a good slogan for some of our advocacy literature. BTW, what part of the country are you from? Do they have weekly peyronies meetings? Thanks for being here. I don't know how the other guys feel, but having you ladies aboard sure makes things easier to handle. I think it's very important for us guys to know what you ladies are feeling. This should help men realize that they should be talking to their girls about this disease. There is no need for them to go through this alone. Thanks again! Keep the Faith...Blink
- Yeah, sorry about the swearing in that forum but that's the way things are sometimes, I warned you that it was a little crazy!
- I stand by my comment that the medical establishment is, as a whole, highly corrupt and money-oriented. This is based on the experiences of myself and many, many others. Most western medicine is only concerned with treating the symptoms, and of course if they weren't like that then it would mean much less money for the pharmaceuticals, only a fool would think that the main concern of the "health" industry is health. Of course this isn't the fault of the doctors, they largely just regurgitate what's taught to them at med school or whatever. But many of them are very condescending and hate it when you start to question their views. Mention candida and you'll probably get some crap about how it only occurs with people who have AIDs, or mention something like leaky gut and you'll be lucky to get much more than a blank stare! I could go into much more but it'd take too long, check out some of this stuff if you can.
http://www.thedoctorwithin.com/index_fr.php?page=articles/articleindex.php
- About the mindbody stuff, yeah I know that it could be construed as blaming the patient, sometimes justifiably so, but that isn't what I meant at all (read again if necessary). You say you still have Peyronie's disease, what do you mean by this?
You still have the curve? That isn't so much of a problem for me, but the other stuff that goes with it (poor erections, painful veins, poor urine stream, prostatitis) and even other stuff such as poor digestion/allergies/chemical sensitivty and probably much more that I can't think of right now, I believe it's all related to a greater imbalance and that it can be cured by taking care of the body with proper nutrition, exercise, right mentality etc. I'm not even sure if I have traditional "Peyronies Disease", I can't recall an injury, don't really have any lumps/ plaque, the curve isn't THAT bad (about 27 degrees). I don't think any one case is the same though, there are many variables to consider for sure, but I believe that the body can nearly always heal itself from almost anything with the right care and attention.
>>You say you still have Peyronie's disease, what do you mean by this?<<
Um, that I still have Peyronies Disease thirty years later?
My point was that my attitudes have changed. I would venture a guess, in all modesty, that I know more about health and wellness than the average doctor, the average man in the street, and even you. But that knowledge, and the attendant changes in behavior that might have led to spontaneous healing, still did not make my Peyronies Disease better. That was the point I was making.
>> ... the other stuff that goes with it (poor erections, painful veins, poor urine stream, prostatitis) and even other stuff such as poor digestion/allergies/chemical sensitivty and probably much more that I can't think of right now<<
My point, really, to you was to consider that your take on this is a point of view, and it may be incorrect. I know that you may feel that you have it figured out, but IMHO, you don't. And the fact that a doctor may be inadequate to the task of figuring it out, and do no better a job than you can do, still doesn't make you right.
What you do not seem to have is a lot of data about your health. You have some historical facts (no obvious history of trauma, for instance) but do you know if you ever had a cytomegalovirus (CMV) infection? CMV may affect Peyronies Disease, and be a local, chronically resident trigger that is set off by other circulating humoral factors. Do you have perfect gum health? That may keep your immune system ramped up and a lot of circulating inflammatory mediators elevated. Do you know if your fibrinogen levels are elevated? Do you know if your Thromboxane A2 or leukotriene levels are turned up?
My point is that a careful reading of the literature TELLS us that Peyronies Disease is caused by, or associated with many different causes. Until the day arrives that we start to know what those causes are, or what their common pathways are, and what their final steps are, we will not be able to really diagnose, treat or even understand this disorder.
So you may feel quite confident in your assumptions, but they are just that - assumptions. Since I cannot find enough guidance in the medical literature to guide me or even create a suitable diagnostic plan, I have chosen instead to try empiric medical therapy, trying different remedies to see what helps the most. The approach that has helped me the most over the years has been a "use it or lose it" approach, but trying to have a lot of sex can have its' downside too - believe me.
>> I believe it's all related to a greater imbalance and that it can be cured by taking care of the body with proper nutrition, exercise, right mentality etc. I'm not even sure if I have traditional "Peyronies Disease", I can't recall an injury, don't really have any lumps/ plaque, the curve isn't THAT bad (about 27 degrees). I don't think any one case is the same though, there are many variables to consider for sure, but I believe that the body can nearly always heal itself from almost anything with the right care and attention. <<
I disagree with you about the "medical establishment". I feel that how we care for people is not optimal and that the system of caring is broken, but that the surge in understanding of pathophysiology is directly related to the good scientific work going on in medical centers around the world. So we disagree. ::shrug::
Tim
Caring,
Its hard to get most of us men to go to the doctor for a cold or allergies much less something like Peyronies Disease. I can say that CZ I are one ;).
Liam
I have heard of natural remedies that will cure Peyronie's. But, I've never heard of anyone who has actually been cured.
I believe eating right will probably help you live longer and feel better (than eating bad stuff). I totally support the idea of a healthy lifestyle. I am just doubtful it will help Peyronies Disease. I wish it would! But, I need to see evidence, not speculation.
As far as a wholesale condemnation of the medical profession, I agree there are problems that need to be addressed. However, I would, by far, prefer to be treated in the US than any other country. Doctors saved my life and millions of lives every day.
I also do not dismiss alternative treatments (obviously, because I use some) just because of the huge number of quacks and charlatans in the field.
Each person or each treatment should be judged on its own merits based on provable fact.
Good "healthy" discussion. :) Its always good to challenge beliefs and to have your beliefs challenged.
Rico,
Below are a few quotes lifted from your post. I want to share one member's opinion.
Quote from: Rico on August 11, 2006, 12:24:28 PM
But I do believe also in the body and if you give it a chance, it can heal itself.
There are many drugs that work that never make it to the market place because there is no profit in them.
I know for a fact that if someone eats proper and has his weight under control and exercises, and had no other ED problems, his erections will be stronger. And his body will heal better and adapt to any type of regimen, such as VED ec...
Mind, Body and Spirit!!
I have an entire shelf of books on optimal health, preventing and treating cancer with natural medicine, biomarkers, strength training, and more. I think everyone agrees that caring for your whole body has benefits. Depression, mood, optimism, attitude can all be impacted in some degree with general health. General health can be impacted by many "whole body approaches" to a healthy life style. We also probably all agree a body can heal itself. We all have healed bones and scars to prove it. We have all experienced reversal of colds and flue. So, who could possibly argue with taking a healthy "whole body approach"? I think the answer is "no one".
What makes me shrug much of this off as being an over emphasis, is that many of us had healthy whole-body approaches when we developed Peyronies Disease. Those principle while good, have great limitations. Many health guru's drop dead at an early age, get cancer, and need surgery. They require antibiotics, inoculations, and diagnostic testing. Some diseases in fact are the results of an over active or misdirected immune systems working over-time trying to repair what ain't broke! There are suggestions that Peyronies Disease may fall into that category. My point is that absent modern medicine; appendicitis, broken bones, infections, and other diseases killed people like flies. Whole-body health approaches would have done little to slow that. Of course be healthy, but don't expect a generally healthy life style to fix Peyronies Disease. Not much more can be said about "whole-body health" than this motto, "Be healthy, feel good, and then find something that will actually help your Peyronies Disease". A general healthy life style will very likely do nothing to reduce a curve any more than it will make an old appendectomy scar go away.
I also have read lists of drugs that cost 2 cents to make and are sold for $8.00 or more with the suggestion something should be done. I know however that the cost of a drug is not the ingredients, it is the research equipment, and personnel to develop, test, and market. So, I do
not think there are many drugs that work but that just never go to market. Once it is known that a drug effectively and safety works, the millions of dollars in research has aqlready been spent. Selling the drug is the gravy. I think there are many drugs that have never been researched and developed that probably would work if there were a known market for a company to recoup their costs. With Peyronies Disease, that is in large partl our fault, not the fault of the system. We can all ask ourselves, how many people even know I have Peyronies Disease. For the same reasons, the drug companies also don't know we have Peyronies Disease.
Our war cry should be, "Be healthy, then use that health to jog to the nearest pharmaceutical company and promote research on something targeted specifically at the problem". Go to your doctor and offer your name and number to be given to other Peyronies Disease patients. We have waited for holistic approaches to find a consistent treatment for Peyronies Disease for hundreds of years just like we have waited on conventional medicine. Both have hit us in the pocketbook. Even the ones targeted at the penis have not consistently delivered. Those aimed at the whole body have never been credited with one improvement in any study or on any forum I have visited.
Rico,
That post made me feel bad. I feel put in my place by a very good post from a very good guy. It had gut level passion, some great lines, and a great philosophy.
I am glad we had this exchange to clarify your philosophy that goes with your regimen. It gives me a much better understanding of the what and why behind your chosen course. You truly do not and will not have yourself to blame for not doing your best, and that in itself makes all the difference.
Good luck, and best regards my friend.
That was a good eye opener for all of us. I remember some years back I was having a problem with anxiety attacks. I tried using subliminal message tapes to help with my condition. Do I believe that those tapes work? I really don't know for sure, but just using the tapes brought my attention to my problem, and over time it went away. If I sat back and did nothing, I would get nothing in return. At least by doing something, it kept me from getting depressed. Just like right now. Do I believe that all of the things we are trying work? Not really, but it is keeping me busy, and giving me hope. None of the natural stuff will hurt me (if used properly) as a matter of fact, I feel better physically because of diet and the supplements I take. Attitude is key in all conditions of the body. Is your glass half full or half empty? Mine is running over! This disease allowed me to dig deep inside myself and face fears that I didn't even know existed. Am I glad I have this affliction? No. Am I glad for where it has taken me? YES! I would not have met such a great group of people such as yourselves had it not been for Peyronies Disease. Keep the Faith...Blink
The last several posts (in context) have left me speechless. And, that's saying something.
This is an example of the forum at its best!
Liam
A marvelous exchange...agree to disagree...compassion, understanding, maturity. These are the thoughts and words that come to mind. It shows the quality of this forum and it's members.
Larry
Tim,
I'd like to find out more about the possible role of CMV in triggering Peyronies Disease. Can you shed some light or provide some links?
Thanks,
Phil
I read about it in a review article, not the original science itself. Here is the link to the review article:
http://www.medscape.com/viewarticle/456650
The gist of it is that: "Peyronie's disease is characterized by cellular overproliferation and excess extracellular matrix production. These features are witnessed in other fibrotic conditions, such as atherosclerosis. Recent evidence supports a role for pathogens in the development of atherosclerosis, such as cytomegalovirus (CMV) and chlamydia. Muhall and colleagues[21] theorize that dormant pathogens can be reactivated by trauma, such as occurs in vigorous sexual intercourse. Cultured fibroblasts derived from Peyronie's plaques compared with control areas demonstrated positive CMV DNA, but transmission electron microscopy failed to demonstrate any viral inclusion particles. These authors speculate that an aborted CMV infection had occurred, but was still able to initiate a fibrotic process after trauma."
He concluded the review article with these words: "The field of sexual medicine continues to attract some of the brightest and most imaginative minds in medical science."
I hope that is true.
The reference is: "Mulhall JP, Barnas JL, Martin DJ. Peyronie's disease plaque-derived fribroblasts harbor cytomegalovirus DNA. Program and abstracts from the American Urological Association 98th Annual Meeting; April 26-May 1, 2003; Chicago, Illinois. Abstract 1059." It is a reference - I do not know if it has been published yet in a peer reviewed journal (much sub-par work is never published).
Tim
"Subject line on this post edited for easy reference"
Quote from: Caring on August 10, 2006, 11:50:32 PM
Mr BLBC
I applaud you for telling your friends and family. I can picture your friends with their fingers in ears...TMI TMI. Of course they didn't want to hear it. It runs too close to home, something may happen to them, someday, or it may already have- but they can't tell anyone. Who wants to know about .....Peyronies Disease..............shhhhh.
Who knows where your openness may lead.
For me, being a woman, it was very difficult to talk about Peyronies Disease to anyone. However, I can sort of relate to your experience.
I have a very close friend who has complained of the lack of affection in her marriage and physical changes in her husband, so I did what any responsible Peyronies Disease involved person would do, talked to her about it and then drug her rear to a Peyronies Disease meeting. When we left, she asked how in the world I knew about this (Peyronies Disease), so I told her. I got the TMI- TMI too. But, in the long run, she now understands the disease and has a new understanding of what her her husband has silently been going through. No, he has never seen a URO and to this day, 3 yrs later, he still does not know she went with me to that meeting. He would never admit, even to her that he has any problem.
Occasionally I get a phone call, wanting more information, and just the other day, she said that she may have talked him into finally seeing a Dr. For this macho, redneck man, that is a huge step. Fortunately, he is going to make an appt. with the Dr. we heard speak.
I tell you this so you can see an example of what your willingness to open up to others about Peyronies Disease can have. One day, someone may come to you and ask for help, and you will know exactly where to send them.
Helping others while helping ourselves.
Fantastic!!!!!
Caring,
I don't know you very well yet but I hope that will change, I hope to continue to read posts like this as they make me tear up......3 years is a long time.....wow....
I'm sure you've read Mrs.BLBC's posts on the ladies board, she's a very special lady...:)
Mr.BLBC
"Subject line on this post edited for easy reference"
Many men feel isolated, embarrassed or ashamed to talk about this Peyronies Disease with friends, family or even others here with the same problem. I would like to thank Rico for taking the time to send me personal messages on questions I had about supplements, dieting and other things I hoped to gain knowledge about.
Thank You my Brother. I will pray for you and all others here as well.
Ziggy
Hey, quick question. I'm contemplating going skydiving and I'm curious as to whether there would be any possible negative effects on my Peyronies. I'm about two months into it and I'd hate to do anything to set myself back. Does anyone have a clue as to whether this possibly could?
Danny I have sky dived before, personally if it don't deal with your feet (which feel like their gonna fall off) I say go for it, it shouldn't effect your dick in any way. Considering (and realize I don't have a dick) your dick hangs out there I would suggest a "hugging" pair of underwear. I'm not telling you "you must wear a pair of whitey tighty's" there are some kwell one's out there so treat yourself to some snug underware and enjoy jumping from that airplane!
Zig it is beyond me why any man, once he accepts he has Peyronies Disease would be embarrassed to talk about Peyronies Disease. I suppose I can only write it off to hormones. I know that if women were to have a similar disease they would be vocal and demanding a resolution. Trust me they would! Personally I do not see Peyronies Disease as a "man's" disease it effects me TOO, so by gawsh (I really cleaned THAT up) I am doing everything I can think of to get the medical – pharmaceutical community to open their eyes about Peyronies Disease!
Thank you for your kind words.
Yes 3 years is a long time for one to have this and do nothing, either medically or to restore/resolve issues in a marriage. Even without Peyronies Disease, that is not a comfortable way to live ones life.
Yes, you do have a very special, passionate woman in your life. You are very fortunate she is involved here and in the fight for your personal lives.
Stay tuned in and online with this wonderful, sometimes strange ::) support group.
DO. Man, I'll go with you skydiving and video record us. It's all about Living.
Caring: Strange??? Stranger than who?? Hell, If we can't laugh at ourselves, we are in a bad way! If I had to choose to laugh or to cry....I'd choose to laugh!! I have cried enough in my life. I'm finding that after the shock and reality check passes, most of the people on this forum have a great sense of humor. Hawk and his merry bunch!! Keep the Faith...Blink
DannyOcean,
The only concern about skydiving I can think of is that harness that goes through your legs. I never looked at one that closely, but I seem to remember from pictures that it goes on both sides of the privates and through the groin areas on both sides. You might want to check into extra padding....
Let us know afterwards whether it did create a problem, and also how much fun it was and whether you wet your pants.....
Scott
My wife's nephew (an adult) did a tandem jump with an instructor who had a bad leg. The instructor told him to wear shorts (and the did not give the students a jump suit). To make a long story short, after the jump he was singing an octave higher, his shorts and boxers ripped all the way and they had to land sitting down (bad leg). He said his wife had to pull splinter out of his backside for a week. It's really funny to hear him tell it. But, at the time it happened......OUCH!
Liam
I was searching on the penis septum, this is where I have my scar. I came upon this site, "Gray's Anatomy-The Penis-yahooligans!Reference"
I thought the very bottom of the text had a good true look at the inside of the penis, how the nerves where layed out ect...plus the text is more specific than most I have read....I put it in my favorites...
Rico
Scott,
Unfortunately we have now dropped the drug coverage out of my plan starting this month, we save $100 on this. My insurance company has lied to me on a consistent basis, I've been very disappointed with the coverage I've received thus far. To appeal anything they won't even get back to you for 60 days minimum. Just recently I tried to get my Soma Correct covered, Mike Davis from Augusta took care of all the paperwork etc. First they promised us a $400 payout. The first time we filed the paperwork they rejected and claimed the codes were incorrect. We got this fixed and went to great lengths to do so with an uncooperative doctor. Now they will only reimburse me $146 and are going back on their promise of $400. When Mike and I confronted them they called Mike a liar. Mike got so furious he had some upper management people from Augusta Medical Systems call my insurance. They wanted to talk to the original lady who promised me $400. Conviently she no longer works at the company and was terminated for unspecified reasons a month ago. My insurance company then attacked Augusta Medical Systems and called them liars and said they overcharge for their VED's by "hundreds of dollars and take advantage of people." So pretty much crap hit the fan, I'm looking into an appeal on this but like I said its a minimum of 60 days before you even get a response, which they may reject anyway. I may just drop health insurance coverage soon, for me its a waste of money altogether.
ComeBackid
ComeBackid,
I hope that when you said you were thinking about dropping your insurance, you were just p.o.'d and not serious. I know that you are younger than most of us old codgers, but even at your tender age and the low probability of developing a serious health condition (other than Peyronies Disease), you *must* keep health insurance.
Of course, there are ways around everything. If you work for a large company, they may have more than one health plan, and you could change at open season. If your company has only one insurance plan, but is still a sizable company, you could complain to your company health plan administrator, usually in human resources/personnel. Failing that, you can complain to your state insurance commissioner, and believe me, the last thing an insurer licensed by the state wants is a complaint investigation.
For the benefit of everyone here, why don't you name the insurance company? I have always believed that great companies should get public praise, and poor companies should get their just due....
If you want more, send me a private message and we can go into all the details.
Scott
I'm currently unemployed and just graduated college living at home for the time being. I have sent letters appealing some decisions and I did file a formal complaint with the state insurance commission, the guy did nothing for me and claimed MEDCO was out of his jurisdiction. My main problem was with MEDCO who administers drugs for my plan, and a company from Rochester, Michigan who deals with the durable medical goods. I've talked to several pharmacists who've encountered the same problems I have in dealing with MEDCO. I wrote MEDCO and wrote to my board of trustees overseeing insurance operations and filed a state insurance commission complaint. I tried being nice with MEDCO and they lied and decieved me so I let them have it, they deserve what they got. Three lies is three to many. I still do have health insurance but just the basic coverage at this point, I still believe it is a waste of money to pay individually if you don't get it through your work, at my age of only 22. The fatcats continue to profit and put a couple more BMW's in their driveway.
ComeBackid
ComeBackid,
Wow!!! And I thought you were just a young novice in need of help....You've covered all the bases, and I have nothing else to suggest. Please do consider keeping your insurance, even just for basics, as you never know whether you will be in a car wreck or fall off a cliff. Have you seen hospital "retail" charges?
Please feel free to call upon me at any time I can assist you etc . etc. etc.
Scott
The following appeared in this Sunday's "Mail on Sunday" – a large circulation UK newspaper, in a column by Carole Caplin, their lifestyle advisor. (She is also the woman who is reported to advise Tony Blair's wife on everything from clothes to diet)
Question: I have Peyronies's disease and it's becoming more and more distressing. As well as the obvious detrimental effects on my marriage, it is also affecting my confidence. Any advice would be welcome. Steve, Cambridge.
Answer: Peyronie's disease causes fibrous hardened tissue to form in the penis, resulting in pain, bending or indentation, and in some cases, loss of erectile length. It is most common over the age of 45 and affects about one percent of men. In severe cases it causes impotence or incomplete erection, but early detection can reverse symptoms. Medications used to treat it include vitamin E, PABA (a B-complex substance), collagen, steroids and colchicine, which is also used for the treatment of gout and helping prevent scar tissue.
Proper nutrition can improve overall health, boost the immune system and help the body to heal itself. Avoid sugar, dairy products, refined carbohydrates, fried foods, junk food and caffeine. I'd also advise you to switch to organic foods, fruit, whole grains, vegetables, soy, beans, seeds, nuts, olive oil and oily fish. And of course, drink plenty of water. To help prevent connective tissues thickening, take 750mg of the enzyme bromelian three times daily.
You may also benefit from Autonomic Response Testing and immune system strengthening.
*************
You don't know whether to cheer that the subject has even been mentioned, or to cry at the glibness of the response
Flexor
As a Brit, I appreciate this post. That Carol Caplin should be offering advice on a subject that is continuing to baffle the whole of the medical profession is worthy of a Monty Python sketch - rather like the one where the cleaning lady is hunting the quark.
Can't say that I appreciate the Mail on Sunday or any other day for that matter, but at least the subject got a mention. Ms. CC can clearly cut and paste, but it is a pity that she didn't stumble upon this forum and give the guy the web address.
We should at least make sure that our GP's and urologists know about it so they can pass it on.
Percival
For what it's worth here is the link.
Interesting ::::raising eyebrow ala Spock::::
http://www.guardian.co.uk/science/story/0,,1874818,00.html
Liam,
Wow, interesting, I guess its a start to learn from, lets see how the procedure has come along in 15 years.
ComeBackid
Interesting that the title of the article says "Man rejects first penis transplant", and the article points out that it was removed for severe psychological problems.
This gives new meaning to the old joke "I wouldn't f*@# her with someone else's dick!"
Tim
http://www.msnbc.msn.com/id/3297042/
"And of course, drink plenty of water. To help prevent connective tissues thickening, take 750mg of the enzyme bromelian three times daily."
I took this excerpt from a post a couple down, I remember someone mentioning Bromelian, is there any studies or scientific proof that it can keep connective tissues from thickening? Sometimes its concerns me that we try to tie what one drug will do for something, and rationalize that it could work for peyronies, seems like this should be beoing done by the researchers and doctors. On the other hand, no one is trying anything new except the collaganese and VED's, maybe someone on this forum will discover something that works.
" it can heal...but I do believe to use just time, especially in the first 12 to 18 months is a gamble I won't take, because this is the time one has the best chance for something to work...."
Rico,
I remember when I had the disease many years ago, my penis was still bent the same way, but much more flexible, there is no doubt in my mind that attacking the plaque with treatments earlier on is better, unfortunately I don't have that option anymore. The thing one needs to be careful about is are they still attacking the plaque while its in the "active," phase? I think we have tried to simplify what the "active," phase is, but for me it seems like my peyronies all along was every so slowly worsening up until now, maybe some peoples peyronies are always in the "active," phase but they don't notice it right away. For me it seemed like I had a phase where my plaque was soft and stretchable, compared to where I am today, where my plaque is hardened and contracted, possibly still stretchable but will take much more time to do so.
I too have a problem with this 'active phase' thing. I think that one can go in and out of 'active phases' with peyronies if 'active phase' is defined in the classic sense of inflammation and all of that. I also have a problem with the idea that peyronies is somehow more difficult to cure after the 'active phase' is complete. I think that some people who get 'cured' actually just happened to be fortunate and recovered despite whatever therapy rather than because of it. So while the term 'active phase' might make sense to a physician, I'm not sure it does to me as a patient. At this point, we don't have a proven solution to this peyronies puzzle, but we are certainly gathering a lot of pieces, and perhaps maybe even getting a few in the right places. That is a process that becomes much easier with such a large and dedicated group of people who provide such great input and ideas on the various threads of this forum. There are just so many peyronies sites around now and they all have their niche, but there is nothing else going on quite like this on all of the web, at least not that I have observed. From Rico's expert input from a body building perspective to Tim's expert input from a physician's perspective and of course Old Man's VED expertise, Hawk and all the rest, I could go on forever. As a result there is just a lot of pertinent data and opinion and patient experience, all building up here in one place. There is just so much value in that for all of us and for all who are looking over our shoulders. I am just really optimistic that this riddle will soon be solved and that many participants and observers right here will benefit from that. My from the heart personal thanks to all who are participating and making this possible.
I am very confident, that if anything close to this was going on anywhere else in the world, on the Internet, you would have found it. ;)
George999:
Just adding my 2 cents worth about the so called active phase. Over the past 5 decades of my Peyronies Disease, I have been in and out of the active phase at least 4 if not 5 times. Each episode brought on new and different symptoms. Each case went away or into remission with different therapy treatment. Some possibly was spontaneous regression, who knows, but they went away only to come back at a later time.
I found that the most reponse that was received as far as treatment is concerned was gained during the early stages of the curve, plaque, nodules, string like cord on the dorsal area, and on and on.
Anyway, the bottom line for me at least, is that any results that I received was during the very early stages of development. My firm belief is that some treatment should be started as early as possible, but with caution not to aggravate the situation. Over zealous exercises can and will do further damage to already damaged tissue resulting in more symptoms. So one must use extreme caution in the type of treatment they select.
Old Man
Well, months ago I (and my doc) felt I was "stable." SURRRR-PRISE! Over just the last 2-3 weeks or so, I am "active" again. The large mass seems to be growing (if you will) in a new and different direction. The plaque "plate" has been consistent up until now; covering the majority of the top side of my penis. Wide at the base and narrowing towards the head. I have maintained at bend of at least 70 degrees for months. NOW, the plaque is changing shape and has begun creeping down the left side of my shaft.
The mass isn't moving, it is enlarging to one side and seems to be wraping itself around my shaft covering roughly the center 1/3 of my shaft. Now it is making my penis not only curve upwards at a nearly 90 degree angle (as has been the case for about a year), but is now causing my penis to twist strongly to the left. I have always had a natural hang towards the left, but now it is becoming more pronounced and severe. Sigh. Surgery my only hope?
SteveW,
I've had my disease for 7 years now, mine seemed to have slowly worsen until this past April when it suddenly shrunk and hardened, and the curve got a little worse.
I thought you were working with the traction device? I would try ALC at least 2000mg per day, if not more, that seemed to help with my pain and Hawk has reported to me it helped with his pain as well. Have you thought about trying the soma correct VED? Didn't you have Verapamil Injections as well before with no luck? If I were you I wouldn't go for sugery just yet man, especially with collaganese, I'd at least wait around long enough to try them out, even if they are slow as hell in getting their product to market. I seem to be having some small gains with pentox, my penis is hanging better and my erections are more full, perhaps you might try that. Studies show that it can reduce plaque even calcifications if your on it for long enough.
Steve,
I am so sorry to hear the news about your placque. I know how discouraging it can feel to have that happen. Hang in there.
Tim
ComeBackid,
When my partner passed away in June, my twisted dick was just not too far up my list of priorities. I have not been in traction or undergone any treatment in almost 4 months. Then, in the last few days...bam!!! Again!!! Oh btw, the pain is quite severe.
Tim,
Thanks, bud.
SteveW
SteveW,
I wish you the best man in coping with your loss, keep the faith and stay strong!
ComeBackid
http://www.loupaget.com/july-05.php
I do believe the knife is the last chance hotel...
Rico
Hi all, first time here so not sure if this is correct spot to ask my ? but here goes. I had inguinal hernia surgery a little over a month ago. After the first week or so, noticed that my penis was sore (like it had been wrenched around) whenever I got an erection. A few days later I noticed a small bump near the base that was and still is tender. I went to my Uro yesterday and was diagnosed w/ Peyronies Disease. So far I don't have any bending, just started to notice a slight hour glass shape when it is hard. I am curious if anyone has developed Peyronies Disease after a surgery in the lower abdomen. I was knocked out for mine so who knows what fun they had down there during the operation. All fun aside, I am having trouble thinking that it's possible that if I hadn't had the hernia op I might not now have this new life long situation to cope with. Any thoughts?
Welcome Csup, We are sorry to hear about your Peyronies Disease but glad you found us, especially at this early stage. I am also glad you are participating in the discussion.
Just because "A" precedes "B" does not mean "A" caused "B", but it also does not mean it didn't. I have heard a lot of anecdotal stories such as yours. It is also well established that there is a higher rate of Peyronies Disease (although still not very high) among men who have had a prostatectomy within the prior 6 months than there is in the general population. I have heard no explanation other than catheterising, nerve damage reducing blood flow, or clamps etc to keep the penis away from the incision site.
thanks Hawk. I have no way to prove or disprove for that matter that this is a result of the operation. I do know that 5 weeks ago I did not have any symptoms that I knew of. I have thought about a possible wrong movement of my penis during the procedure, but didn't consider clamps. That hurts just thinking about it. LOL. My Uro wants to start verapamil injections, but after doing some fast research online the last 2 days, I am not sure about this approach. I did start taking vit. E, and have been taking L- arginine as I am a runner and mess around w/ weights. Maybe I will let this work for a short time to see if this "disease" goes in a different direction, hopefully at least no worse. Right now I feel lucky compared to some of the conditions I have read about. crs
It would be wildly speculative to guess why a surgery might have caused Peyronies Disease.. but here goes!
It is possible that a retractor "leaned" on your penis too hard. Thus, this might represent an "injury", and a good normal healing process leads to remodeling and return to normal. This might still happen to you. I would like to know the exact technique used during your operation - how you were draped, and how they cleared the operative field.
It is possible that this will get all better - in fact more likely for you than for those without a (quite possible) mode of acute and recent injury. good luck.
Oh, and think hard about getting a "broad spectrum vitamin E" - I get a SolRay one that has gamma tocopherols at 300 mg.
Tim
Tim, I bought Nature's Bounty full spectrum 400 IU vit. E. Taking 1 a day for now. I am also considering calling or visiting my surgen to see just what might have been the procedures he used as far as draping, etc. I wish all surgeries no matter how small were filmed. The op itself was a plug and then a patch over that. crs
I tend to agree with Hawk. But.... I had a dentist who injured my shoulder while extracting a wisdom tooth (many moons ago). I guess anything is possible.
This reminds me of a limerick from Dean Martins swizzle stick (from the TV show):
There once was a man with a hernia
Who said to the doctor, gol'dern ya
While working away
Make sure you don't play
With things that do not concern ya
I think I'ma gonna go ovah to de couch.
Liam, thanks for the laugh this morning. Started my day off right!
Note to all:
Injuries to one's penis can and does sometimes happen during surgeries. During my double hernia operation (local anesthesia done) the scrub nurse, accidentally used the wrong clamp (forceps of whatever) on my penis and caused a whole heap of pain. The surgeon removed it and then used the right one. But, about two weeks later, nodules appeared in the exact spot where the clamp was used. It was Peyronies all over again.
IMHO, injuries can be done during surgeries. However, I firmly believe that most are not caused by negligence, but just things like that just happen sometimes.
So, bottom line, we have no control over what happens to us while under anesthesia, either total (put to sleep) or by locals, etc.
The above is just my personal observation. BTW, the surgeon apologized for it all.
Old Man
I would think that during a hernia surgery, the penis should not be having anything clamped to it. It is not exactly a supporting type of body part. If it is an issue, I would think just taping it down and out of the way would work. but I am no Dr.
Old man, you don't say whether you had Peyronies Disease before your hernia op. I did not, so this makes it a little harder to swallow that this could have been an surgical accident or result of the procedure technique. My family Dr. originally thought I had a double hernia (one on either side). My surgen said I only had the one side. My Uro who just diagnosed the Peyronies Disease said he thinks I still have a hernia on the other side, so this does not give me a warm fuzzy feeling about my surgen (who won't be anymore) or his capabilities. It would be interesting to know if any of his past hernia patients got Peyronies Disease right after their surgery. crs
csup:
Sorry, but I guess that I assumed that most everyone on the forum knew my background with Peyronies Disease. At 77 plus, now, have had this crazy mess since the age 23.
Yes, there were bouts (4 or 5 to be exact) of Peyronies Disease prior to the hernia surgery. Had a radical prostatectomy prior to that also. During the prostate surgery, the drainage tube was accidentally stitched into the abdominal wall requiring a second surgery. Had a bout of Peyronies Disease after those surgeries too.
I checked with my uro about the prostate surgery as to whether or not it could have aggravated the Peyronies Disease condition. He stated that possibly the clamps or "tie down" of the penis could have caused some minor injury and it was not uncommon during some surgeries.
My hernia surgery required a Goretex patch all the way across my lower abdominable cavity to help hold up the walls since I had the prostate and correction of drainage tube operation which left the walls thin for some reason.
Anyway, bottom line, Peyronies Disease did occur after at least two surgeries and it was attributed to them by my doctors and/or surgeons. Whether or not those statements are actually true of not, I have no clue. All I know is that the Peyronies Disease returned after those surgeries. Since catherters were used after those surgeries, that factor could also easily enter the picture also, who knows?
Old Man
Old Man,
Sorry to hear you have had to put up w/ this Peyronies Disease mess so long. When you say "bouts", what exactly happens at that time, and what is it like in between the bouts? crs
Quote from: Tim468 on October 19, 2006, 09:34:38 PM
Oh, and think hard about getting a "broad spectrum vitamin E" - I get a SolRay one that has gamma tocopherols at 300 mg.
Tim
Tim I have finally learned enough about Vitamin E to want to change the type (broad spectrum) that I am taking now.
Were can one purchase the SolRays - is it generally available at most Drug stores
Thanks
Mister Dillon
Mister Dillon,
I went on a web search and found Solaray brand vitamins, not sure if this is what Tim meant. I bought "Natures Bounty" brand from CVS (Michigan chain drug store) that has full spectrom tocopherols at 400IU. I think Tim meant 300IU instead of 300mg. Some standard vitamins such as vit. E spec by IU (internatioal units) instead of mg (milligrams). Someone please let me know if I am all wet on this.
crs
csup and Mr. Dillon:
Vitamin E is in I.U.s instead of mgs. csup is right, they are international units of measure, etc.
Old Man
The vitamin E is is measured in International Units. The Solaray version I get is 400 IU, with 300 milligrams of gamma tocopherol (the tocopherol and tocotrienes subunits are measured in milligrams).
Here is the breakdown:
Bio E® Gamma Plex
Product description:
A Superior Tocopherol Complex with Tocotrienols
Ingredients:
Vitamin E (as d-Alpha Tocopherol) 400 IU 1333% (% of RDA)
Selenium (as Yeast-Free l-Selenomethionine) 200 mcg 286%
Natural Tocopherol Mixture: ~
d-Gamma-Tocopherol 300 mg ~
d-Delta-Tocopherol 120 mg ~
d-Alpha-Tocopherol 70 mg ~
d-Beta-Tocopherol 5 mg ~
Rice Tocotrienols (providing 5 mg Tocotrienol) 30 mg ~
Tim
More correctly, Alpha-tocopherol is measured in IU, the rest of the Vitamin E components are measured in mg. The reason for this probably has something to do with the advent of synthetic Vitamin E. Synthetic Vitamin E is not exactly chemically equal to natural Vitamin E, therefore it takes more mg of synthetic E to equal the effect of a lesser amount of natural E. So 400IU of sythetic E (alpha-tocopherol) will consist of more amount (mg) than the same 400IU of natural E. As I recall this all gets explained somewhere on Wikipedia. The International Units represent alpha-tocopherol activity rather than amount. The purpose was thus to avoid confusion. All the rest of the toco's have no synthetic analog, thus no reason to introduce a second means of measuring them and they are sold in mg just like most other supplements.
- George
I did not know this got so complex. The vit.E I bought says it is 100% natural as d-alpha tocopherol, plus d-beta, d-gamma, and d-delta tocopherols. It doesn't list the mg's of these ingrediants, nor does their website. Only 97 left in the bottle, then maybe I'll look for something better. LOL. Does the high gamma count do anything special?
crs
csup, what you've got is actually known as Vitamin E + mixed tocopherols. It is not actually a real broad spectrum E. The broad spectrum E like the one Tim is referring to have not only the full range of tocopherols, but also the full range of tocotrientols. Of all of these the d-Gamma is the most important. It seems like it is the d-Alpha and the d-Gamma working synergistically that do the job. And the magic number for d-Gamma is around 260mg to 320mg complementing the 400IU of d-Alpha. Not to be to discouraging, what you have is far better than synthetic E and somewhat better than natural E without the mixed tocos. I have used all of those in the past. In my experience the broad spectrum form like Tim is using outperforms all the other three forms. It comes in a softgel that is about the size of a 1,000mg Vitamin C tablet, much larger than the other types which are usually softgels about the size of a big pea. So it won't hurt you any, thats for sure, but the full spectrum form will likely work better for you.
- George
Thought I'd make this post on here even though it is technically off topic- looking for some good replies. I'm looking into a pill cutter to cut my viagra pills into quarters. I found a lot of cheap ones online but read they don't cut viagra pills well cause of the coating. I found this link online selling a cutter made just for viagra but it is much more than I want to pay.
http://www.swisscut.com/how_it_works.html
Does anyone have any links to effective cutters you can buy online that will cut viagra pills into quarters? Also does anyone have sites you can buy viagra at cheap prices?
ComeBackid
ComeBackid,
I have tried 2 different pill cutters that sluffed off too much powdered pill while making the cut. I finally just started scoring them with a single edge razor blade and breaking them. From my point of view, it works better. Even with my trazodone I put my thumb nail on the side opposite the manufacture score line and break them. I think cutters are less precise and waste more of the med.
Hey ComeBackid,
I did a quick google on "viagra cutter" and came up with these:
http://www.forgettingthepill.com/cutters.html (http://www.forgettingthepill.com/cutters.html) ($19)
http://www.cutviagra.com/ (http://www.cutviagra.com/) ($15 but looks like a generic pill cutter)
http://cgi.ebay.com/PILL-CUTTER-SPLITTER-CRUSHER-VIAGRA-LEVITRA-CIALIS_W0QQitemZ290041776547QQihZ019QQcategoryZ75041QQcmdZViewItem (http://cgi.ebay.com/PILL-CUTTER-SPLITTER-CRUSHER-VIAGRA-LEVITRA-CIALIS_W0QQitemZ290041776547QQihZ019QQcategoryZ75041QQcmdZViewItem) ($10 on the ever popular eBay)
http://www.drjoelkaplan.com/shop/customer/product.php?productid=16218 (http://www.drjoelkaplan.com/shop/customer/product.php?productid=16218) ($10).
I'm sure that there are more out there, just google it and start sorting through the results.
Good Luck,
Steve
I have tried several,including the one with the insert shaped like Viagra. I use the inexpensive one I bought first at CVS. Sometimes there is a little powder. I just snort that (I'm KIDDDING). I figure if I get close It doesn't matter, 25mg or 26mg or 24mg.
I like the design of the Swiss cutter. I just don't like the price. It doesn't seem cost effective. But, it is a gadget. I love gadgets. I might put that on my Christmas list.
Hey guys thanks for all the quick responses, I'm going to search around a little and just check in at CVS as well and look at some in person. Steve, your right that viagra cutter looks like a regular old pill cutter, I swear after looking through links off google I've seen the same pill cutters for different prices. Liam, I like the swiss gadget to, just way to exepensive,hopefully I'll get one in my stocking on christmas morning!
hello,
Been busy and haven't kept up on posts but I will. No changes in the curvature or
regression since last posting. Seems things are just sitting where they were when it first set in.
Question for PDE5 users. Has anyone tried one of the sites on line for ordering meds? My wife had spoken to several men who use the same place and since they all said the pills were effective, she ordered some. Guys after prostate surgey take larger doses than most of you say you take. They came today (3 weeks to delivery). Last year I tried one place one time. I couldn't tell the difference from any of my scripts but shipping was too expensive IMHO. Of course I was just weeks out of surgery then too. I have no idea if they would work today.
I'm going to try these. Got a Levitra 20 and Viagra 100....not by those names of course. I did have to laugh at the name of one of them...it's called Manly! If they are good it'll be a whole lot cheaper and, they are shaped better for cutting. See, this post does fall in line with the subject! FFmedic
This one is a pill cutter and magnifier all in one. Couple a shot of Viagra and a magnifier and it should boost anyone's spirits. ;)
http://www.forgettingthepill.com/cgi-bin/ForgettingThePill/order.cgi?orderone++Tools+1+367+1
Hawk,
I saw that one, I think it only cuts into halves though and not quarters. I also found this site that sells viagra, the real kind and generic, I was going to order a supply of generic viagra, what do you guys think, does it look legitimate?
http://www.xlpharmacy.com/online-pharmacy/buy-levitra-online/235.html
I don't think you will find a pill cutter to cut in fourths. It will require 2 cuts, 1/2, then 1/2 of that. I suggest you try a single edge razor blade and score the pill with a cutting action (not just a straight down guillotine action like a pill cutter. If on piece is a bit smaller, just take it first and include any crumbled pill with it.
You will have far less crumbling of the pill with this method.
As far as the online source, what does a "reliable source" look like as opposed to what an unreliable source would look like??? How would you ever know if you were taking full strength or taking impurities?
Finally, fats that are in every meal greatly interfere with the absorption of Viagra. I think Levitra is a better choice.
Hawk,
That is the tough question, what is reliable and what isn't, found some cheap prices online that I thought I'd post for everyone.
100mg 60 capsules- $160
http://erectile-dysfunction.safemeds.com/
-This site really seems the least reliable to me but has the cheapest price
100mg 32 capsules- $196
-This site seems very reliable and is a canadian drug company.
http://www.jandrugs.com/?gclid=CKafl7P_kYgCFSVtFQodxUP-Ow
It is backed by the BBB, CIPA, MIPA, and Pharmacy Checker.com, the prices are a little more expensive but may be worth the higher price to assure you are getting the real deal.
Both of these places I've listed the generic viagra, phizer's version is just way to expensive.
I was reading in www.umm.edu
This is a medical journal, I tried to link the article, but didn't work? Anyway I put in search ginkgo and pde5 and came to this on ED.... it said that Oxygen is the suppresser of TGF-B1 and the best thing one can do for the health of the penis is to get good circulation for the oxygen rich blood will suppress the tissue from scarring....
Ginkgo does help in this method along with circulation.....
Pentox and viagra I was reading on another study that used together are more potent for ED, the patience were give no more than 50mg of viagra twice a week and 1200 mg of pentox per day...they felt there was synergy with the two drugs.....I do believe they might have found the most effective way to get oxygen rich blood to your unit, and along with viagra.....
Ginkgo is mention also for this effective and was proven to be a pde5 inhibitor.... I have notice a warming effect in my hands and feet since being on the ginkgo and also in my unit....
Now the ved doesn't supply as much oxygen rich blood, but there is some in there and along with everything along the lines of oxygen or circulation...people can read it themselves, it is OXYGEN that suppresses TGF-B1....and in my book oxygen is oxygen.... it would be hard to argue that the pentox/arginine/viagra taken like prescribe could be beat for delivery..... if one is taking his ginkgo twice a day, arginine several times and ginseng along with opc's and other blood thinners like Vitamin E, and is in good shape and working out everyday with lots of carido for circulation, especially the legs(thighs) and core along with a perfect diet, they might be able to get enough circulation along with the VED to accomplish the same effect....
People who would use the traction devise might want to rethink, not much circulation going on there, might even hamper it.....
Rico
Rico
So perhaps its time to start spending some time at those new fangled oxygen bars? ;D
They probally would kick you out for hooking up your unit to it....walking around with wood all day, or more like a chubby is what they think you should be doing.....how does a guy suppose to get any work done:)....
Isn't this a fancy way of saying circulation:).... I just had to say that!
Rico
Maybe Angus can build a small hyperberic chamber and provide photo's and a parts list. :D
So I have a general question. Treatment with pentox, l-argine, & viagra seems like it might be helpful. Pentox is an FDA approved medication as a blood thinner but this 'new use' is not approved until a great deal more research is done.
Is it legal for a physician to prescribe it for peyronie's? Do they have that leeway to make a judgement? Should I have the expectation that my urologist will prescribe it for me if I ask? What factors might I need to be aware of to convince my doctor?
Welcome Mick and PJ,
Stick around and let us know how you progress (hopefully for the better!) here. I found it *enormously* helpful just to "talk" via the boards with other men dealing with the same set of problems, and to share what has helped and what has hurt over the years. It allowed me to feel less isolated, to communicate better with my GF about my Peyronies Disease, and to take charge of my recovery from Peyronies Disease.
Tim
Welcome PJ. Thanks so much for contributing to the forum by posting comments and questions. We depend on a wide number of members participating rather than a few monopolizing the conversation.
Physicians have latitude to prescribe a drug for a use other than the specific condition for which it was originally developed. It is quite common and is referred to as "off label" use. I think most physicians tend to be a bit more cautious about this practice however.
If anyone is interested... I few years ago i ran across this product and have used it for severval things ever since. They claim to Oxygenate the blood among many other things. I have used it to effectively cleanse water in foreign countries, taking it with me anytime I travel, used it on my dog for hair loss/stress (ok, so she is people too and the original reason I bought it). I use it for allergies, colds and used it to heal a dermatitis issue on my hubby. I figure it can't hurt, and may accomplish your desires to get more oxygen to any affiliated body parts. Make up your own minds, but I like the stuff.
http://www.nzymes.com/product-ox-e-drops.htm
The thrust of the article is that there are stem cells in the TA of patients with Peyronies Disease. These are cells that are "pleuripotent" - meaning the can transform into more than one kind of other cell. They do not seem to be present in the TA of people without Peyronies Disease.
The article (basicly) says that these cells in Peyronies Disease are responsible for the formation of calcifications (when that does occur), and the message is that turning off that transformation might prevent the formation of calcified lesions. How to turn off cellular machinery without hurting other cells is the trick - it is what keeps us from curing cancer easily. We can kill cancer cells, but unfortunately we kill other cells and the person dies. So the likelihood of being able to afffect this easily is not high. For now, we will have to stick to things that affect specific biochemical pathways, rather than entire cell lines.
Tim
Thank You Tim for your explanation,
Another example of how great this forum is.
Power
It's as good as any other theory. You might try to think in terms of synergy instead of linear movement.
But it is probably true that for some of us it will require elimination of lesions, restoration of normal, and maintenance of normal, as "steps" in healing.
Tim
Does anyone have any other symptoms other than pain on erection and of course lumps, indentations, and curvature. Does anyone have any discomfort in the pelvic region? I seem to be having a flare up and the next day after having sex I sometimes have an ache in my penis, and pelvic,rectal, or lower back discomfort. It goes away after a day or two.
This is interesting as I was about to post something of this nature tonight. I don't have any discomfort in that region but one thing I have noticed is that the temperature of my penis tends to be cooler than I remember it being. It's not cold really but definitely not warm either. So here's a bit of a pet theory I'm developing...
I wonder if one of the things that might be a contributing factor to Peyronies is some sort of circulation problem. This could be caused by a number of things including some sort of structure problems which are contributing to insufficient blood flow to this region. If there was a structure problem this might help to explain your pelvic/lower back discomfort problems.
It's interesting that the most promising drug for Peyronies Disease is Pentox which encourages circulation. I wonder if there could be more to this. Perhaps many of us who have Peyronies Disease have problems with circulation in this area. Because of this we might be more likely to have had a traumatic injury than others.
And here's something else to ponder. I wonder how "well-endowed" those of us with Peyronies Disease are (or were before our injury). Personally speaking, I'd say I'm average to slightly below average. I wonder if there are any people here who are very well-hung with Peyronies Disease or if we're all a bit on the small side.
I'm trying to ponder all this stuff for a possible connection. It's out there I know but my gut tells me there could be something here.
Danny,
Circulation is very much an established factor.
https://www.peyroniesforum.net/index.php/topic,130.0.html
However, you are likely paying much closer attention to your penis than ever before, and some of these "discoveries" are no doubt normal.
This is off topic maybe but im not sure where to post it. I for one believe Peyronies Disease can be healed some or cured with the mind. I have been studying remote viewing and astro projection lately. I know a guy that claims he can astro project and remote view. Theres no doubt in my mind that both of these are real. First off I myself have astro projected at nighttime during dreams. I didnt know what this was until I read about it. What happens is that your soul leaves your body, many nights I have had my self leave my body and I float above my body watching myself sleep. When im floating above I have great pain, I feel as if I am going to have a heart attack. I hear loud vibrations and see flashes of blue and my body is paralyzed below. I always thought maybe I was having a heart attack but it was weird because I was watching myself and it seem as I was not dreaming so I was very scared. Anyways it wasnt until I looked this info up and found it to be astro projecting. Now lets look at remote viewing, you can see the present, past and future with remote viewing. Now it turns out I think time is a Illusion since this is possible. I know that sounds crazy but its proven people can see the future with this. Anyways to my point, I have also read the mind and body are one, one can heal itself with its mind. I found this article on another Peyronies Disease site, im not saying its real because users were saying he was lying on the forum. Here is what he posted:
QuoteAbout 20 years ago I was young enough to think I needed a bigger/longer penis. I like hypnosis for self help. So, over a period of several months I gave myself the post hypnotic suggestion to increase the size of my penis. After some months what occurred was nearly a 90 percent curvature when erect. I strongly believed that my brain applied to the muscles/tissues on one side of my penis and not all round.
Not painful but a bit uncomfortable.
At first It did not occur to me that the hypnosis was the cause. When it did occur to me I decided to try to give the post hypnotic suggestion to have it straighten out. I put myself under at least once a day and occasionally twice a day with the carefully worded idea that the curve would go away and my penis would return to normal. I would think about and visualize a straight penis several times a day.
FOCUS FOCUS FOCUS
It took nearly a year but my penis went back to normal. I do not suggest that mine is a typical case but for someone in pain or feels strongly about the problem should do several things. 1. Buy a book on self hypnosis and practice putting yourself under and giving yourself simple but observable suggestions for practice. 2. Find a hypnotherapist to teach you "self hypnosis" A visit or so should be enough to get you started working on your own.
If you believe strongly enough and are motivated sufficiently to solve a problem, the human brain can do most anything.
My wife was amazed at how the problem occurred and how it straightend itself out, so to speak.
Don't play with hypnosis, the brain can do some funny things, it is very literal and can interpret words and phrases differntly than our conscious reasoning. It may take a while but if you want it badly enough you can have success.
Now I know when I finally thought I had Peyronies Disease my condition went from good to not so good literally in a week. I developed a dent that was never there for 3 years since I first got Peyronies Disease. Now I just had mild erection problems and slight bend before I thought I had Peyronies Disease for 3 years when this condition developed. Now all of a sudden I get a dent going across a quarter of my penis in 1 week when its been almost 3 years since I first would have gotton the condition? Now the dent has spread to cover half the front side across the penis. I really think my mind has made my Peyronies Disease much worse, im going to think positive and hope for results and try VED eventually. I know this sounds crazy, but the mind is more powerful then we will ever know and it can heal our body im convinced. What do you guys think?
Phil,
I was diagnosed with nerve entrapment before another opinion said Peyronies. I had (have) many of the same symptoms you have.
Couldbeworse
HCTB, I've seen enough evidence of a mind/body connection to believe that you're on to something. No doubt you'll find many naysayers but I for one think we're just scratching the surface of how powerful the mind can be on the healing process. Do I believe all of this is just in our minds? No, I think there's a physical approach and a mental one as well. Combined they can be tremendously powerful. I've been curious about the remote viewing thing myself for a while so I guess this is my official excuse to dive into it. :)
Also, I discovered something interesting over the last 24 hours. I have this thing called Wild Divine (no affiliation) that is a bio-feedback tool that I use to practice deep and regular breathing. Yesterday I started playing with it for the first time in a few months. I did a bunch of deep breathing while reading, online, etc. The result? I've been hanging way better than any time in the last few weeks. Could be coincidence but I wonder if getting lots of oxygen to that region isn't as important as getting blood to the region.
Maybe it's placebo effect and maybe it's coincidence but since only good comes out of deep, regular, diphragmatic breathing I'm going to keep it up. Thought I'd share it with you to see if it helps anyone else.
P.S. I don't want this to sound like an ad for Wild Divine but there's a deeper level of breathing that I achieve when I'm using that than I ever have before. I'd recommend this to anyone looking for a relatively cheap way to reduce stress, improve breathing, etc.
One more thing...what's nerve entrapment? The reason I ask is that when I move my body in certain ways (e.g., if I lie on my back with my knee to my chest and then drop it to the floor) I notice a mild popping sound in my pelvic/hip region. It's never painful and it's been there for a while so I've never given it much thought but I wonder if there might be something there causing some restriction of blood/oxygen to my nether regions? That might be a crazy theory but the mention of nerve entrapment caused my ears to perk up for some reason.
Although you may have been astral-traveling or projecting, you may also have been having a parasomnia behavior (arousal out of REM sleep and being unable to move while having consciousness - sometimes associated with a distal view of the body).
At any rate, all this is curious to me. It is difficult to imagine either thinking ones way to Peyronies Disease, or thinking ones way out of Peyronies Disease, and especially difficult to imagine doing both! Franlkly, it is easier to imagine that you are nuts, or that your vision was skewed by something, rather than really curved! But taking it at face value, it is an odd story.
I know that stress can make anything worse, and can trigger pro-inflammatory states. It is harder to imagine it in terms of "incomplete" visualization of a bigger penis (you did not mention if your curve came from an enlargement on the long side of the curve or a shrinkage on the short side of the curve!). Heck if that was it, I would have focused on finishing the job to streightn out by enlarging both sides, not shrinking back to the original size!
Like may things, it is more likely that you had a temporary condition that improved over time and during which time you went through all sorts of machinations in your head. It is less likely that you meditated, thought, self-hypnotized or otherwise thought it away.
Tim
Tim it wasnt me who cured himself, it was another guy at another forum. Anyways Thanks Tim and Ocean for the positive feedback. Tim I think parasomnia behavior and astro projecting are very similiar in that one aspect. The thing is I had strong buzzing in my body, blue flashes, and extreme pain as if I was having a heart attack. I had this same "dream" as I thought it was back then like 30 days in a row. Anyways I just really think our mind can help heal our body for sure. Im going to look deeper into to it when I get the time. I will post any intewresting articles I find. Good luck to us all! We will all come out of this ok if we keep working together.
Quote from: howcanthisbe on November 07, 2006, 08:05:22 AM
Tim it wasnt me who cured himself, it was another guy at another forum.
HCTB, It also was not clear to me you were quoting another person and I was getting ready to call you on that because I distinctly remember that post in detail. I have properly put that section of your post in a quote box so your post will be more clear. Please go into modify and see the simple way I did this so you can use this technique. you will see the word
quote within brackets at the beginning and
/quote within brackets at the end of the quote.
It has been a while, but
as I recall that post was on the BTC and was attributed to RZZ who me and others on this forum know well, and it was an impostor post. In other words RZZ did not make that post but someone posing as him told this incredible story. If that is true, it adds even more doubt to an already unbelievable post. While we may not have even begun to understand the power of the mind, it is equally difficult to grasp the vulnerability of many minds to ideas that are logically and factually without support.
Hawk sorry about not making myself clear, I will in the future. It is bad news indeed to hear this was a fake post, and yes it does make me feel bad. Im not too worried though, because I know the mind is capable of at least helping Peyronies Disease. I will research this topic further.
Dear Old Timers:
Where do all the people go, the old peyronies brothers, do they get better, give up???? Fall off the earth....I can see why they didn't go back to the old forum, what a zoo!! I never was on there but visit it a couple of times, terrible....this is so much more pleasant, you get blasted for telling the truth, or as you see it:), once in awhile, but that is healthy also, kind of checks and balances...
Hawk you brought up RZZ and I always read his post on dmso, very good, where is he?? Did dmso work for him, or some of the guys using the VED ect.....does anyone have a idea of where they go....
I'm just curious, I wonder if they don't get better and give up, or get better and go away, I hope this is the case....
If anyone has any news on positive results from anyone from the old forum or who they know, please post....
Rico
I know it may seem to alot of people that im grabbing at straws here, but I found alot of good reviews on a book at amazon talking about the mind healing the body. I dont know if I can post a link here so im not going to yet. Anyways one book talks about the author had cancer and she did her mind healing pratices for 3 months and totally elimanted the cancer. Anyways I just thought I would post that, if nothing more it gives me a little more hope that if all fails for me I can always try the mind approach.
Greetings Folks,
I'm new to a few things -- this forum, Peyronie's Disease, and my being diagnosed with Peyronies. So let me start with an introduction: I'm Tamarack Song, 58, a writer, educator, and lover of the wilder places. A few weeks ago I noticed a compressed groove on one side of my erection, near the base. "Peyronie's Disease," was my new urologist's diagnosis. "Take 800 I.U.s of vitamin E per day for two months,and 400 I.U.s thereafter, and let's see what happens." A half dozen questions later and I had the whole picture. Or so I thought.
Being the eternal questioner, I started doing some online research, and I'm still at it. What I've come up with thus far is that, because I don't have any pain,inflammation, or bending, I either have a mild case or I'm only in the acute (beginning) stage. I ought not wait to see what happens, says one practitioner on his website, because if I am in the acute stage I should begin treatment now, to lessen long-term damage.
Here's where it gets sticky. An author who's written about Peronie's Disease suggested I try Thacker's Formula, because with my economic situation I would have trouble affording some of the other natural treatments (which I would prefer over prescription medications, even though they would be covered by insurance). He said Thacker's Formula is as good or better than the other treatments anyway. What I've been able to learn about Thacker's Formula leaves me unconvinced: Is it a hoax? Would the people whose conditions improved, have improved anyway, because 30% of cases heal on their own?
And then there are the dozens of other suggestions, that range from vitamins to minerals to herbs to enzyme formulas. Not to mention the prescription options. Could anyone give this neophyte a hand with some perspective and advice?
Thanks, and I look forward to joining in, and supporting, this sharing.
Tamarack
Welcome Tamarack and a special welcome for actively participating.
At this time, I will address only a few issues I feel somewhat confident about. This is not meant to discourage you but to give you accurate information.
Instead of 30% resolution it is much closer to 10%, maybe 15% tops, and probably 8% in actuality. I have never heard a urologist of any renown with Peyronies Disease that placed that number above 15%.
As you are developing deformity, you have inflammation regardless of pain.
If you have had Peyronie's less than 6 months, I would bet the farm you are still in the acute stage with inflammatory response.
Due to time constraints, I will end for now and let others jump in. Good luck! You could not be in a better place than this group of members at this stage of your Peyronies
DannyOcean,
Google "pudendal nerve entrapment", and pursue references to that type of nerve entrapment and other similar conditions.
howcanthisbe and DannyOcean,
Interesting that your posts are taking a metaphysical bent ;). The lady you're referring to is probably Louise Hay, who has written a number of books and helped a multitude of AIDS sufferers.
Scott
Thanks Scott. I will look into that further.
By the way, perhaps it's mental but the deep breathing thing is leading to much better hanging throughout the day. I have to think that there is probably a hanging/healing relationship and it's really interesting to me because I've never been able to figure out why I hang well at times and at other times not so well. I'd love to hear others try this and see if it helps. By the way, when I deep breath I really focus on the lower abdomen. It almost feels like I'm breathing from groin. Breathe as low as possible. I've tested this on the Wild Divine and it produces the best results.
Worst case scenario...by doing this you'll learn how to breathe more effectively. Best case...perhaps it helps to heal Peyronies Disease and improve overall penile health.
DannyOcean:
Have your ever thought about the fact that deep and measured breathing is one of the greatest ways of releasing tension? I have used that method of relieving pain for many years now.
Relieving tension is one's body also allows it to relax all over and therefore contributes to the better hanging of your penis. Try it sometimes when you are uptight and tense. Take at look at your testicles and penis to see where and how they hang. Then do the breathing exercise and observe them again.
You might be surprised at the results!
Best to you, Old Man
Hi Tamarack,
Welcome to the forum. I would make a few suggestions - but most of all, I will challenge you to challenge your own assumptions! I say this because I believe very strongly that that which has helped us and that which has hurt us in the past can both get in the way of healing from Peyronies Disease.
A few suggestions off the bat. Read up here on brands of vitamin E to use - all are not created equal. Additionally, in the realm of "natural healing" I would strongly recommend supplements, including l-arginine, citrulline and acetyl-L-carnitine (and if you want to get fancier, propionyl L-carnitine). good and cheap supplies of these are available at bulknutrition.com (which caters to body-builders!).
A daily program of "stretching" out the potentially contracting tunica albuginea (TA) by getting daily erections, or by using the vacuum erection device (VED or "penis pump). The latter is more recommended because it promotes straigtening instead of simply getting hard (and remaining bent in shape)(although hard).
A holistic approach to health, including ramping up your anti-oxidant use (particularly via diet changes), and exercising, and sleeping well, may all help your penis, and will certainly help your mind.
However, I would not suggest for a minute that you avoid allopathic medicines. Something is amiss in your body, and your sexual health is at stake. I suggest that you consider all agents that can work for you to promote health. This can include Viagra or cialis or levitra - all of which inhibit Phosphodiesterase-5 and thus will modify (reduce) the inflammation of the penis' TA. Additionally, use of the Transforming Growth Factor beta-1 (TGF) inhibiting drug Pentoxiphylline (Pentox) is associated with reversal and prevention of disease in mouse models and also in (now) humans. It is very exciting to me that you are at a time point where you might benefit maximally from the use of this agent.
I hope that others will chime in with suggestions. We are trying right now to present a synthesis of the information we believe will most help a newcomer to the board and to the disease just like you, to save time (and to reduce our writer's cramp from typing!).
I hope that this info is helpful to you, and that you consider the potentially penis-saving role of some of the modern medicines.
Tim
Hello Tamarack, and welcome to the board...
Tim has summarized a good approach for you. I did want to jump in and mention that the Thackers Formula has been cussed and discussed for years. It was tried by many men (myself included, years ago) out of frustration and willing to try anything. How the formula actually came about and its hoax factor was discussed for the longest time and now isn't discussed much because of lack of data and other things have caused a lot of us to put Thackers on the very back burner. It did not help me at all, and I don't know of anyone in the past years who claimed it worked for them. I don't think anyone really knows the long term consequences of DMSO application, if there are any. The things to use in Tims post are much more recent than the Thackers Formula, but it's your decision on what to try. In summary, we just don't want you to burn valuable time on things that don't have a good track record. There is much information here on VED use as well... you could begin with the Highlights of VED's read-only thread in the Child Boards (under development). There is a link to these on the home page. This would give you a good foundation on the general thoughts here on VED's and their use.
Again... welcome to the board.
Quote from: Old Man on November 08, 2006, 10:14:29 AM
DannyOcean:
Have your ever thought about the fact that deep and measured breathing is one of the greatest ways of releasing tension? I have used that method of relieving pain for many years now.
I think that could definitely be the reason why I'm improving. Whatever it is I've noticed a big difference the last few days. I'm waking up "well-hung" and have had much less of the "turtle effect." I'm not sure if being more relaxed or getting more oxygen to that area or what but I'm not going back to shallow breathing ever again. :)
Can anyone explain what causes the turtle effect? I get that mostly when I workout and it is very annoying. Is there anything you can do for it?
Thanks
Fighter
fighter:
The turtle effect when you work out could be caused by your body adjusting to the extra effort being exerted on it during the exercises. I have noticed the same effect when I do my cardio exercises at the Y. After several routines, when urinating afterward, I notice the drawn up effect.
I relate it to my body's extra adrenaline being added because of the extra exercise, etc. Could be wrong on this, but I do know that stress and worry causes one's libido to be reduced. So, it stands to reason that heavy workouts could cause the penis and testicles to be drawn up sort of like the "cold weather" effect.
Just my opinon and observation.
Regards, Old Man
Old Man,
I guess that is a possibility? I don't know? All I do know is I have been working out for a long time and it never happened to me before Peyronies Disease? Some people had PM me and said they think it could be blood flow? I just order Ginkgo to help improve my blood flow? Let's see what happens...
Thanks
Fighter
I seem to get it a lot more now as well since Peyronies Disease. I remember getting it in the past very infrequently. Sometimes during squatting sessions although I wonder how much of that was a bio-mechanical thing. Now I get it was I run and ride the exercise bike. Less so during yoga.
I have no doubt that there is a circulation/blood flow/relaxation thing involved here. My own experimentation with deep breathing exercises during the last week have confirmed that for me. I'm not saying that figuring this out will cure Peyronies Disease but I do thing that having a "fuller experience" more often will probably help a lot in terms of providing the best possible condition for things to heal.
There is no evidence of inherited memory even one generation back. Wild cats big and small sharpen their claws only on wooden surfaces that will not dull claws.
The factual explanation is simple. The body only has a specified quantity of blood that it constantly and sometimes instantly rerouted to where it is needed. What does happen is that when the body is called on for serious fight or flight, blood is drained from many deep organs, the skin, the penis, and anywhere it is not needed and fed to the large muscles for performance. It is a very simple that explains why working muscles warm and pump-up when worked. They have an increased volume of blood flow. The body only has so much blood, it has to come from somewhere.
No doubt decreased blood flow or reduced size accent this very normal occurrence
I don't care to debate wildlife or evolution.
I was not discounting nature. I was explaining why your body draws blood from one place and routes it to another. It is a VERY powerful process that moves blood to areas primed for specific action. One pumping weights or running for his life does not need blood in their penis. They need it in their muscles and their body reacts to put it there. This is similar to what you feel when you are startled. The blood drains from your face and your eyes dialate.
Over and out!
I think I've posted on this before but I've noticed a lot of twitching in my muscles over the last year. Although it started before my Peyronies Disease I've wondering if there might be a connection. Anyway, after doing some research I think I have what is known as benign fasiculation syndrome (http://en.wikipedia.org/wiki/Benign_fasciculation_syndrome). BFS is kind of like Peyronies Disease in that it isn't clear what causes it or what cures it. I am wondering if there might be a connection and thought I'd post here to see if anyone is experiencing this and if there might by any connection between BFS and Peyronies Disease? Perhaps something circulation-related?
Interesting...
So I posted over on a set of forums for BFS and one individual suggested something called "peripheral vasculitis" which is a form of nerve irritation that prevents a steady supply of blood and nutrients to nerves within the body. He thought this might lead to onset of BFS (I need to do more research there).
Anyway, I looked up "peripheral vasculitis" and ended up coming across a reference to connective tissue disease (http://www.medicinenet.com/connective_tissue_disease/article.htm). Here is the description:
A connective tissue diseease is any disease that has the connective tissues of the body as a primary target of pathology. The connective tissues are the structural portions of our body that essentially hold the cells of the body together. These tissues form a framework, or matrix, for the body. The connective tissues are composed of two major structural protein molecules, collagen and elastin. There are many different types of collagen protein that vary in amount in each of the body's tissues. Elastin has the capability of stretching and returning to its original length - like a spring or rubber band. Elastin is the major component of ligaments (tissues that attach bone to bone) and skin. In patients with connective tissue diseases, it is common for collagen and elastin to become injured by inflammation. Many connective tissue diseases feature abnormal immune system activity with inflammation in tissues as a result of an immune system that is directed against one's own body tissues (autoimmunity).
Diseases in which inflammation or weakness of collagen tends to occur are also referred to as collagen diseases. Collagen vascular disease is a somewhat antiquated term used to describe diseases of the connective tissues that typically include diseases which can be (but are not necessarily) associated with blood vessel abnormalities.
Is it me or does this sound a lot like Peyronies? Maybe this connection (no pun intended) has been made before but if not it might be worth exploring. Maybe it's just a coincidence but the onset of BFS just a few months before I developed Peyronies Disease seems a little strange to me.
I'd love to hear any thoughts you might have. And of course feel free to tell me I'm loony. :)
This is a great group! I see a distillation process going on here, with many people bringing their experiences together to be compared and contrasted. At the same time, the knowledge and approaches of professionals in the field, through their patients, is being made available to the rest of us.
And then there is the biggest reason I see this as a great group: Hawk,Tim, and Angus, thanks for welcoming me, taking me under your wing, and giving me some rooted perspective. I needed that -- I felt like I was on a treadmill, pumping my legs but not getting anywhere. Hawk, I appreciate the dose of reality regarding my naïve "no pain--no inflammation" belief and my way-to-high remission percentage. Tim, I gobbled up your supplement suggestions, and my wife couldn't have been more pleased with the daily erection prescription order I gave her from "Dr. Tim." And Angus, yoor confirmation on what seemed obvious to me regarding Thackers Formula, along with your endorsement of Tim's suggestions, has me feeling more relaxed, and more clear on a direction to proceed.
If anyone else has advice for someone new to all of this, I would be glad to hear it.
I hope you folks don't mind that I don't get to respond every day, as my profession often has me out in the wilderness. Rest assured that I value the new relationships I am making here, and that you will hear back from me within a few days.
Tamarack
DannyOcean,
I, for one, don't think you are loony. Your post sounds like an echo of a few of my posts in the short time I have been here. In fact, I suggest you go to the bottom of my profile and use the tool there to read my posts.
I do think that my pulmonary fibrosis, neuropathy, and Peyronie's are related, and it is frustrating that none of them has any real solution. What is extremely interesting is, that if you go to websites dealing with pulmonary fibrosis, the disease processes sound almost exactly like Peyronie's, and there have been clinical trials with Pentox and Viagra for pulmonary fibrosis. Not to mention current clinical trials on pirfenidone. My hunch is that if you could cure one, you could cure all three.
Getting back to your fasiculations, the only sure way to find out is to go to a neurologist (if you can find a good one) and let him test you. Or, if the fasiculations aren't causing problems, you might just want to let a sleeping dog lie. If someone suggests an antidepressant to solve the problem, run like hell!
Scott, have you been given either pentox or perfenidone? There is an on-going study of the latter here in Pittsburgh if you are interested in enrolling (I do not know if you are qualified to enter such a study, but there is one going on here).
Tim
If you go to Wikipedia Encyclopedia on-line under peyronies, they do talk about the new treatments under study for peyronies... Pentox/Viagra/arginine and also alc and several other amino's....I think this is another arrow to add to ones quiver when going to his doctor(urologist)....
Rico
oh man, I think something bads about to happen to me. I just noticed a small scar tissue bump on my shaft. its about the size of a grain of 6 salts, like half a bb size but with no depth. Its flat and just scar tissue looking. I think it was tiny a week ago and now its grown. Could it be this is a bump from Peyronies Disease? I have had several small scar tissue bumps come and go, but these were the size of one grain of salt.... this one is a little bigger which scares me. I never thought anything about the others. A month ago I got into it with a girl and remember it hurting at one point, the next morning I woke up I had alot of pain as soon as I moved my penis. That was it though, I could move it after that and do anything with it just fine and it wouldnt hurt. But the first second I woke up I had extreme pain, it only lasted a sec though literally. I thought I was fine, now a month later a small scar tissue area appears, its not even really a bump. You guys think this could be a reoccurence or something of Peyronies Disease? Man O man this Peyronies Disease sucks.
Quote from: Rico on November 13, 2006, 11:42:51 AM
If you go to Wikipedia Encyclopedia on-line under peyronies, they do talk about the new treatments under study for peyronies... Pentox/Viagra/arginine and also alc and several other amino's....I think this is another arrow to add to ones quiver when going to his doctor(urologist)....
Rico
Um, I wrote that.
Tim
HCTB,
It sounds like a skin tag.
No part of what you descibed sounds like Peyronies Disease to me. I think you worry too much.
No symptoms of Peyronies Disease mention bumps ON the penis. Peyronies Disease does not come and go. As long as you have been here, you should know that, too.
Based on everything you have written since coming to the forum and what I know about the disease, I would bet you don't have it. Have you ever been diagnosed?
A tiny bump on the surface skin of the shaft of the penis is not Peyronie's Disease. A quick way to tell is to see if the lesion" moves with the skin, or if it is "stuck" to the shaft. If it slides up and down with the skin then it is most likely a healing pimple, or ingrown hair follicle shaft. It might be impetigo (minor skin infection).
It is abundantly clear, "howcanthisbe", that you are living in a near state of panic, and that you still ahve not gotten adequate diagnosis or help from a medical professional. Unless you like the pain of living in uncertainty, change that.
Tim
Tim the scar tissue moves with the skin. All my scar tissue moves with the skin, even the other bump I have. Its not connected to the shaft, but the way I understand it is its Peyronies Disease even if the scar tissue is on the outside. I mean theres no bump under the scar tissue, and it does move freely. I thought scar tissue on the outside of skin was bad too because scar tissue doesnt expland like normal tissue. So this could still be Peyronies Disease related couldnt it? Im not panicing, I just didnt go from 200% normal sexually to like 75% after I took the meds. I have Peyronies Disease, I have a dent and erection problems. Every where I have read says this is one thing, and thats Peyronies Disease. The dent is growing. But anyways now im confused, I thought any scar tissue on the outside even if its just on the skin and free was Peyronies Disease?
Tim,
When you said, Um I wrote that, did you?
Rico
Liam no I have never been diagnosed. I know this isnt a skin tag,lol. I may seem paranoid but im really not, I know what my condition is. This is scar tissue im talking about, it has a shine to it even. Like I said its not connected to the "core" of the shaft. Its just on top of the skin, I can pull it up and it goes loose from the shaft. But none the less im pretty sure its growing and scar tissue doesnt expand the same way as normal tissue.
Rico, yes I did write that.
HCTB, you really need to see a doctor about this. It does not sound like Peyronies Disease which is a DISEASE OF THE TUNICA ALBUGINEA and not the skin.
If you want, you can go ahead and actually read some of the background data on this condition, but it sounds like you are really making pretty wild and uninformed stabs in the dark. I might be wrong about that, but that is how it looks.
I understand what your saying Tim. You gotta remember before I took the meds I was way pass normal sexually. Then Bam.... somethings up..... I start thinking whats going on. So I look up the med side effects. Ok it causes erection problems..... I stop taking the meds and 3 years later I still have the side effects. Im wondering whats going on, then it hits me.... I have Peyronies Disease. Thats the only reason the side effect didnt go away, because I developed Peyronies Disease. I got a dent, erection problems. I mean honestly I dont even consider that I dont have Peyronies Disease, in my mind I know I have it. I havent even thought of the possiblity that I dont. Thats just me though, all im saying is scar tissue on the skin is bad also right? I have read on a website any scar tissue on the penis can cause you problems.
Peyronies Disease is scar tissue on the tunica. It has NOTHING to do with a skin mark or scar on the skin anywhere on your body, INCLUDING YOUR PENIS. Peyronies Disease does not accompany scars on the skin and scars on the skin do not accompany Peyronies Disease. This message has been related to you by many members, in many ways. Any one of them by themselves, have been crystal clear enough to settle the issue. All of them together are becoming distracting.
Please do not tell us again what you think your skin marks are or what significance you think they may have. It does not matter if it is brown, or shiny, or on your penis or on your chin. We know what they are not and we have communicated that as clearly as any of us knows how without being offensive.
See a urologist and a counselor and listen carefully to them. Until you do, please drop the issue or kindly post on the off topic board.
If you refuse help from professionals, then read the 6000 posts on this forum and you will see that there is not one word about scars on the skin of a man's penis.
sorry Hawk. I missed that somehow. I have read on alot of sites that any scar tissue on the penis is bad because it doesnt stretch like normal tissue. I must have read it wrong or was misinformed. Anyways I wont post anything about it again.
HCTB:
You are getting "hammered" a little bit because you are seeming to fall prey to negative thinking without taking the required steps to make things better.
This is not uncommon - we are all prone to it a bit - some more than others. We are paralyzed by fear, or certain that the news will be even worse, or whatever. We are "too busy" (that is usually my excuse) - but in all ways, what I am describing is POOR SELF CARE.
When we take care of ourselves, we thrive as human beings. It starts with the basics like making your bed in the morning and eating good food; giving your employer an honest days work; and finding a way to exercise. These are really basic things, and you may think "What in hell does that have to do with Peyronie's Disease?"
I would argue that when we care for ourselves, we start to see what holds us back, and how we can change. It might allow you to start to see that going to a doctor and sitting down and talking to him can make you feel reassured.
I am a 51 year old physician. I have darkened and thickened small patches of skin on my arm that re the effects of sun damage. I know that high altitude climbing has increased my risk of skin cancer GREATLY. But I am not a skin doctor, or even very good at rashes. When I FINALLY went to the doctor for a regular checkup, in my fiftieth year (having avoided it for 20 years since I was 30!!), my doctor told me that the patches were benigna and not malignant.
I was relieved but I could have done a lot better job all along. In protecting my skin; in seeking help, and in learning what to do to feel better both emotionally (by getting educated) and physically.
I am going to say this flat out: You can do a better job of caring for yourself than you seem to be doing. It should start with a good doctor taking the time to address your fears and concerns and then working on a plan to get better. If you have a dent in the shaft of your penis, it is probably Peyronies Disease. Your erectile difficulties might be emotional or physiological - that can be determined relatively easily. if you have some sort of (apparently minuscule) lesion on the skin of your penis, why not find out what it is?
Unless your penis skin is burned terribly and contracts down with a scar, a skin cut or lesion is not likely to lead to a deformation or problem with function in a penis. The skin is relatively simple there (not too many cell types). It can be (most likely) a follicle with folliculitis, that you have squeezed and poked and probed too much and is not secondarily inflammed. it will heal over time, and may do "better" if you applu vitamin E to it. It is possibly an STD like herpes or syphilis - a good history and physical and culture can resolve that in one visit. It is possibly related to a cream or soap or something and is a skin reaction (ie allergic). it is not likely to be cancer of the skin, since most penises do not get the brunt of sun damage!
My advice to you (and it is worth what you paid for it) is to stop worrying and complaining and acting fearful and to do something to make yourself healthier and smarter. Start with an exam and an answer to your questions.
Tim
Tim, thank you so much for your excellent post. I have been told by more than one doctor (other than you) that faulty self diagnosis is a trap that even doctors fall into and a critical issue in medicine and medical diagnosis is a degree of detachment on the part of the physician. Some people wrongly assume that education and training are the only key factors to good medicine, but the fact is that it is extremely difficult, due to the normal machinations of the human mind, for even the most educated and well trained physicians to reliably care for themselves. One physician commented to me that it was not uncommon in medical school for one or more class members to abruptly 'come down' with just the affliction that they happened to be studying at the time. Its a matter of reading up on some dread disease and suddenly coming to the realization of 'Oh my God. I have that disease. I have all the symptoms. I just know it!' And the reality is of course, its all in their mind, which only becomes apparent after a brief consultation with a psycologically detatched professional who is able to rationally ask all the right questions and perform a few simple inspections. So I would say to HCTB: You are not alone in what you are experiencing and a brief visit to a professional can go a long way in bringing relief from your fears. So WHENEVER you have concerns and people on this forum advise you to get professional help, do yourself a favor and follow through. There is only so much anyone here can do, you need to see someone who can EXAMINE you physically and advise you. And as Tim has suggested before, you also need to have a counselor in whom you have confidence who can guide you in the right directions on these issues as well.
- George
I posted a couple weeks ago about what I thought was Peyronies Disease. I'll briefly recap.
I'm a 22 year old male in college.
A few weeks ago I needed to do a lot of studying for a big exam. I bought some adderall from a friend and used it heavily for a few days straight. I have done this many times before and I know how it works in my system. On maybe the 4th night of continuous usage I went out and got somewhat drunk. I came back to my place, took some more adderall for fun (dumb idea) and stayed up all night. I masturbated for a number of hours, however I wasn't hard the entire time. I orgasmed just once. I did this for about 5-6 hours.
Over the next couple days adderall usage continued and I realized that my penis shriveled up immensely. It felt very firm when limp. The head was also cold most of the time. Adderall usage contiued over the next 4 days maybe with very little sleep (maybe 3 hours per night?). I then read up on Peyronies Disease and was convinced I had it. When I got an erection it didnt hurt, but it bottlenecked somewhat on its way to a full erection. My full erections were fine. Btw, i continud to masturbate throughout this week long period.
So I get a urologist appointment. Supposedly with a doc that specialized in Peyronies Disease. I had been off the adderall for about a day and I reallyl noticed some improvements in my penis. It wasnt as firm while limp and it wanst cold anymore. he examined my flaccid penis and said "I really doubt it is peyronie's." I honestly thought my penis was back to normal at that point. He prescribed a 2 week anti-inflammtory prescription and I took vitamin E to boot. I stopped the adderall for a couple weeks and it seems like everything went back to normal....
BUT, i did notice that my penis goes SLIGHTLY to the left during an erection AND i do get the bottleneck a little bit. THe bottleneck goes away as the erection becomes full. Also, I do feel that the left side of my penis, while erect, feels harder than the right.
I took adderall again yesterday heavily in order to cram for 2 exams (it has been about 2 weeks since the last time i took it when this whole ordeal started.)
I read online about how adderall is a potent vasoconstrictor. I get really poor blood flow to the penis while I'm on heavy doses. I read about this online with other people too. When I get off it tomorrow I'm sure things will be back to normal for the most part, except for the slight angle to the left when erect.
So... what do YOU make of all this???
Peyronies Disease? Fluke?
Personally I don't think I have Peyronies Disease. I never had any reall pain during this all, I didn't have any trauma other than hours of painless masturbation. I think i just need to drop the adderall once and for all, stop masturbating for a bit, and see if things heal up naturally (penis extends straight again). Perhaps some blood vessels were damaged when they were constricted for so long and when I was masturbating.
THANKS FOR READING!
Johnny,
I found your whole post ridiculous. Discussing the misuse of drugs and alcohol and excessive masturbation would be better suited for a fraternity forum. There is nothing that ties this to Peyronies Disease.
If your doc says you ain't got it, then, you probably ain't got it.
If you have legitimate discussions directly related to Peyronies Disease, you are welcomed to post. But, since your doc said you don't have it, go and enjoy college life.
Feeling like the evil Capt. Kirk (Sat. Night Live),
Liam
I don't think I'm out of the woods yet. The left side seems more firm than the right. And like I said, my erection goes slightly to the left. Any advice? Does my story add up? Should I still be worried?
Yes, you should be worried. I agree it sounds like you have a problem. But the problem is not Peyronie's, it's your drug and alcohol abuse, and your apparent obsession with masturbation. (5-6 hours? sounds like you may be a porn addict). These things will f*** up your life and relationships far more than Peyronie's ever will.
If you've got these things going on in your life, Peyronie's is the least of your worries. IMHO, you need to be visiting an addiction recovery forum, not a Peyonies' forum.
Best of luck to you. I truly hope you begin to make healthy choices for yourself soon.
I think I'm getting a raw deal here. Yes, I am a college student. Yes, I go out and drink. Yes, I have used adderall to study for exams. That's really nothing out of the ordinary. Yes, I have made some dumb choices here and there, but nothing that can't be fixed. No, I don't have a drug or alcohol problem. I'm actually a student at a top university and I will be attending medical school next fall.
Can someone address my problem? Is this a greater problem than not taking care of myself? I hope it isn't Peyronies Disease, but never say never. Am I doing permanent damage by limiting blood flow to my extremities?
I assume now I should
(1) stop using adderall entirely
(2) take a break from masturbation for a while
(3) go see the urologist again in a couple weeks like he suggested
(4) continue taking vitamin E and ?
Johnnyboy:
First, let me say that I am a 77 plus year old grandfather with three children and eight grandchildren. So, as such I have seen just about everything in the ways of life! I know the ways of the WORLD and have experimented with drugs and alcohol which lead only to disaster.
Now with that said, my advice to you is to clean up your act, get your head on straight before it is too late. I know that college life is rough, but you must do whatever it takes to get your life straightened out. It is highly unlikely that you have Peyronies disease having done all the things you have outlined in your posts. But, you should get a good checkup by a urologist who is experienced in Peyronies disease.
When you have gotten the medical exam out of the way and know for sure that you don't have Peyronies, then get on with your life without all the drugs and alcohol. I know from my own experience that both DO NOT WORK! In other words, I have tried them and they positively do not work, especially at a very young age.
Lastly, you state that you are planning on going to medical school and becoming a doctor. Now consider this, suppose you finished medical school and do become a doctor, what patient would want to see a doctor with a history of drug and alcohol addiction (whether or not you want to accept it now)? I don't think that many patients would be satisfied with that, do you?
So, bottom line, I will be praying for you that you wake up, smell the roses and get your life straightened out before it is too late.
Sincerely, Old Man
PS: You are not getting a raw deal on this forum, you are getting good sound advice and you should accept it for what it is worth. If you are referring to getting a raw deal because of your condition, that too should be enough warning for you to wake up and realize what you are doing to your self esteem and your body. Continuing in your present life style will only lead to disaster! If you would like to discuss anything with me further, use the PM and we can talk privately.
I appreciate everyone's lifestyle suggestions, but can someone please give their input on my Peyronies Disease-related situation?
Do you think I have done permament damage already?
What would be the best course of action to let me body repair and heal?
I'm just looking for input and opinions about my sitaution and how it may progress.
johnnyboy:
We have given you good advice on what you should do about your situation. The guys on the forum, except for Dr. Tim, are only laymen in the medical field. However, quite a lot of us have had many years of experience with Peyronies and mens health problems. I have a background in counseling with guys
Again, my best advice to you is to get yourself to the best qualified urologist who has experience with Peyronies and get a thorough examination. Only then will you know for sure (and sometimes maybe not know) whether or not you have the disorder.
The things that you related in your posts certainly have the potential for causing major problems with you most prized possession. So, bottom line again, get professional medical help for a solution.
Also, you might consider getting some counseling toward correcting your lifestyle and what you intend to do with your life in the future. If any of us can help you in any way, feel free to call upon use at any time.
Best regards to you, Old Man
IMHO, the best suggestion I can come up with is to go see a good urologist who knows something about Peyronies Disease. It's very hard for us here on the forum to 'diagnose' someone we can't see. Besides which, I'm not a Doctor, and I don't play one on TV.
I would add to those saying to go to a good urologist to see what he or she thinks.
Honesty compells me to say that you are waving red flags in our face left and right - and the biggest flag is where you say: "I don't have a drug or alcohol problem."
It may be ordinary to use adderal before a test. It was "ordinary" to use amphetamines before tests when I was in college. But I never saw a single student thrive who did so. I saw lots of folks fall by the wayside.
In medical school the most I ever saw or heard of was drinking coffee. That is a long way away from the illicit use of an illegal prescription drug, designed for ADD/ADHD.
So in addition to seeing a urologist, I suggest that you notice what people are saying to you. You are brushing it aside as irrelevant and it is not. And should you be unable to notice what you are saying, and how it really is, then at least stop jerking off so much and give your penis some rest.
Tim
First of all Johnny, take the time to read over this site and LEARN more about Peyronies disease. There is a wealth of information here already and it would be a waste of time for us to sit and type it all out for you over again. Secondly, you give every indication that you are not really paying attention to what we are already telling you to do. You are all in a panic over this thing and the answer is to see a good urologist AND LISTEN to what he tells you.
AND ...
I agree with Old Man on this 100%. Sometimes it takes a 'raw deal' in order to get our attention and get us to change some attitudes. And if this raw deal doesn't achieve that, I am sure that you (Johnny) are going to face more raw deals along the way and they are only going to get rawer. What you have done at this point is no 'big deal'. I think that most of us here, including myself, for one, can all look back at some pretty stupid things we have done in the past. But the hard part is to acknowledge where our attitudes and resulting actions are taking us and to be able to stuff our pride and say 'God, what ever it is I'm doing is screwing up my life and I need help because I can't handle it all myself.' Once one gets to that point things get easier. But until that point, life often just keeps getting tougher and tougher. And if you need drugs to cope with your class schedule, you need to start by spending less time partying and more time studying, and perhaps even lightening your achedemic load, because the way you are going, you are going to fry your brain and who knows what all else (you might even discover that there are things you will miss more than your penis) before you graduate. And hopefully what you are hearing here scares you because you obviously need to be scared. Your potential is awesome, but you are risking throwing all that away for a few cheap thrills. People here love you with no strings attached. That is why they have the boldness to tell you the truth even though it hurts.
We wish you the best. There's lots of good information here on this site. Take it in and digest it and if you eventually do get diagnosed with Peyronies we are all here for you.
- George
I saw a urologist exactly 2 weeks ago. He did a fellowship with Peyronies Disease after med school, so I am hoping he is a very good urologist.
I'm seeing him about in another couple weeks for a follow up.
I'm definitely going to kick the adderall. I don't need it to get my work done, I just need to not procrastinate as much. Something I'll really need to conquer in med school.
And as for "defending" myself, whatever. I've never met any of you, all you know about me what I bluntly posted this morning. I guess I didn't paint a beautiful portrait of myself, but that wasn't my intention. I wanted to give you the straight, honest facts of the matter.
That being said, I'll keep you all updated with my condition and how it progresses.
Johnnyboy:
Good for you about seeing the urologist. You should have stated in your post that you had seen one lately and the picture would have been different for us old codgers on the forum. Since most of us older ones have been through a lot in our lives, posts like yours sends up red flags.
Getting those things off your chest and out in the open may make you realize now that they were bad for you and change must be in order. Only you can control which direction your life will take, so choose wise my son. If I could go back to your age and start over with my present knowledge, there would be many changes. I saying all this to say that you have your entire future in front of you and now is the time to choose the direction.
Do hope that I have not offended you in any manner with my comments, but I just felt led to make them as I saw it.
Sincerely, Old Man
Hi,
Got a question, don't really know where to post it. Since english is not my native language, I'm having some problem picturizing the word 'bottleneck/hourglass shaped" penis. I think i have a fair idea of it, but just to be sure, could somebody perhaps give a good explanation of it, perhaps even a picture, says more then a thousand words after all.. :)
Sure - how about with ASCI art?
"Hourglass" is:
| |
| |
| |
\ /
\ /
/ \
/ \
| |
| |
and "Bottleneck" is:
_____
| |
| |
| |
/ \
/ \
| |
| |
An hourglass is a constriction in midshaft, and a bottleneck is a constriction nearer to the end that never flares back out.
To better understand such statements in the future, I recommend going to "www.google.com" and typing in the word. Then click on "images" as a review option. Doing that should give you an idea of the image. Adding the term Peyronie's may help.
Of course, I got this when I hit "hourglass" today to test this theory:
| |
| |
| |
/ \
/ \
| MILLER |
| LITE |
OK Now it looks familiar ;D
Who here has had there testosterone levels checked? What were the results? Three reasons I ask:
1. I just got done reading the book The Testosterone Syndrome and it makes a pretty compelling case that a good number of physical ailments are caused by a depressed level of testosterone in the body (which is likely caused by environmental factors, stress, lack of exercise, poor diet, etc.)
2. I've been feeling a lack of libido lately and to be honest this seemed to start around the same time as I contracted Peyronies Disease. I'm wondering if there could be a connection here. Even something as simple as depressed test levels resulting in less rigid erections which could injury during sex more likely.
3. I've recently self diagnosed myself with BFS (http://en.wikipedia.org/wiki/Benign_fasciculation_syndrome), a condition in which you get a lot of involuntary muscle twitching. I was browsing a set of forums about BFS tonight and searched for "testosterone" and found that a good number of people with BFS had tested low for testosterone. I'm thinking there could be a BFS-low test connection and I'm also thinking that my BFS could be related to my Peyronies Disease somehow (since they both started around the same time). If those turn out to be true then a Peyronies Disease-low test connection is quite possible.
Thoughts?
My T levels have slowly dropped over the years, I am certain, although I only finally got it checked recently. I do not know for certain, but have some clinical reasons to believe this. My Peyronies Disease, however, predated the declines - I am pretty sure of that (based on fertility and semen volume and other indicators of how high the Testosterone might be).
The recent worsening in my case might be related however. I will check out the book.
Tim
Danny,
I think it is clear that reduced erections are a factor in many but not all cases of Peyronies Disease (aging, diabetes, prostate surgery, stress, BP meds). To that extent, and maybe through other channels, I think low testosterone levels could at least contribute to Peyronies Disease. The question is whether this is a direct cause or an indirect contributor. Based on my many years as a computer geek, I think it is the latter. ;)
T levels will typically decline about 1% a year after 30. That's normal. However, if many of us have below average T levels that could have contributed to the injury in the first place and also could hamper healing. One of the theories related to health and T level is that as people's T levels drop (regardless of age) they are more susceptible to illness because the body perceives that they are no longer replicating and therefore less "useful" to the ongoing operations of the planet (in the words of one of my favorite singers Eddie Vedder "It's evolution baby."). Therefore one of the most important things you can do is to ensure your T levels remain high so that your body say "Hold on...let's keep this dude around."
If that theory holds water than it's quite possible that there could be a correlation between appropriate T levels and the body's ability to heal itself from Peyronies Disease.
Quote from: DannyOcean on November 20, 2006, 10:33:02 AM
they are more susceptible to illness because the body perceives that they are no longer replicating and therefore less "useful" to the ongoing operations of the planet (in the words of one of my favorite singers Eddie Vedder "It's evolution baby."). Therefore one of the most important things you can do is to ensure your T levels remain high so that your body say "Hold on...let's keep this dude around."
The problem with that approach is that it shows a very flawed understanding of the theory of evolution. Evolution perceives nothing. Evolution does not perceive usefulness or lack of usefulness. Perception by definition, suggests intelligent design. Evolution also does not give a damn about the operations of the planet. Evolution and survival of the fittest simply operates on the theory that what is less fit is less likely to reproduce and get added to the gene pool. it would follow that that those with low testosterone reproduce less and low testosterone would become a very scarce trait. Again though,
declining testosterone indicates they all ready reproduced when they were younger.
Frankly, I would tend to dismiss a person that advanced such an unscientific approach. If he simply presented observable studies connecting low testosterone to such conditions, and demonstrated that the reduction in testosterone was the cause instead of just another effect of aging, that would get my attention. It drives me nuts when people try to make science "cute" to sell a book or explain a concept.
Evolution asside (I don't want to get into that discussion) the possible correlation between T levels, and an incidence of Peyronies Disease may point to a possible reduction in the incidence of Peyronies Disease. If such a correlation can be proven (I don't have the skills to do it -- how do we find researchers who can?), we might be able to save future sufferers from the personal h**l that we've all experienced!
IMHO, we need to keep an eye on this.
This is only my opinion with very few facts:
I think verifying whether there is a connection would be as simple as testing A hundred men near onset of Peyronies Disease and 100 men of comparable age and see if there is a pattern. It is very unsophisticated and any General Practitioner (with access to the men) could do it. In fact it is so unsophisticated that I cannot believe it has not been done. It would be the joke of the century if doctors failed to make that connection. We also have men here that are on testosterone replacement therapy. I do not recall that they have reported a connection between the testosterone replacement and their Peyronies Disease improving.
Also remember that testosterone carries health risks as well reducing other risks. That is even true of naturally produced testosterone. While I think it might be a contributing issue in some cases, I predict that a hard connection (no pun intended) will not be found.
But my honest opinion here is that the whole Testosterone thing is a rabbit trail. Certainly IF you have ED AND IF you also have abnormally low testosterone, that would be something to pay attention to. But Peyronies? When you look at what is currently the number one most effective (and probably ONLY viable) treatment for Peyronies, Pentox/Arginine/Viagra, you are looking at a treatment that facilitates delivery of oxygen and nitric oxide AND attacks free radicals and inflammation. That is precisely where the cure for this disease will be found and that is the direction we should be looking toward. Sure, stuff like collagenaise may prove beneficial in quickly blowing away major plaques and other techniques like the VED have proven their usefulness in preventing progression, but the ultimate cure revolves around oxygenation, nitric oxide, anti-oxidation, and anti-inflammation approaches. This is the root of the problem with Peyronies as well as almost all other degenerative diseases.
Testosterone, though, can affect our immune system and cellular function in a myriad number of ways. I have read reports of finding testosterone receptors on Dupeytren Contracture cells in cell culture. There are all sorts of possible connections. The easiest one to make is decreased erection quality and a higher propensity to injury, but that owuld be only a starting point.
The fact is that the world's literature on this problem is inadequate and studies like this have NOT been done.
Tim
Tim, I think you are absolutely right on this. But you would also have to acknowledge that once you get into discussing the issue of hormones, there are a whole host of hormones out there that are subject to abnormal deviation that could very well play a role in Peyronies. Testosterone, Estrogen (yes guys have estrogen too), Aldosterone, Cortisol, Epinephrine, and more ... the list is nearly endless. So, yes, I think if one suspects that one of these is out of range, that should be treated. But that, in and of itself, will not fix the Peyronies syndrome which is, by its nature, a degenerative process that takes on a 'life' of its own. Thus, Peyronies will still have to be treated separately from whatever hormonal issues exist that may have set the stage for it. I personally am convinced that there are a number of scenarios that can 'set the stage' for Peyronies, and all that remains to happen is the infliction of a minor trauma, which would otherwise go unnoticed, and bang! You suddenly, out of nowhere have Peyronies and suddenly feel guilt over some 'stupid' thing you did to cause it OR 'anger' over some medical procedure or medication that must have caused it. So my gut feeling is that the whole Peyronies thing is more complex than we can even imagine. In the midst of this, I am extremely thankful that certain reliable treatment vectors are being identified that are being shown to bring relief without regard for whatever it was that initially set the stage or whatever it was that eventually tripped the switch.
- George
Quote from: George999 on November 21, 2006, 06:16:00 PM
Tim, I think you are absolutely right on this.
- George
I agree with you. I'm starting to see what I think is the inter-connectedness of all of this. So I'm reading the book The Hardness Factor and thinking about the correlation between erection hardness (something that can be measured according to this book) and Peyronies Disease. My guess is that if you had tested a number of individuals before they contracted Peyronies Disease they would probably have tested below average on erection hardness. The things that depress erection hardness are more or less the same as those that lead to low test (e.g., stress, obesity, smoking & drinking, lack of exercise). So I'd venture to say that normal to above average test levels and normal to above average erection hardness both help to prevent the onset of Peyronies Disease.
Having said that, the more important question for us is whether these things help the healing process as well. I don't have any solid evidence to suggest that they do but my guess is that there probably is a correlation. Unfortunately it's something that we don't have any studies on and therefore it'll have to stay at the intuitive level for now.
I thought I was the only one with BFS and Peyronies Disease. Interestingly I think my libido is stronger since I started taking udamin which is a presription vitamin specifically for prostate health. Another strange issue is cialis. Its only supposed to last 36 hours but after taking only 5 mg i can feel the affects for days. Then on might ask why do I need it. I think its a part safety blanket. I
I see the world doesn't stand still when I'm out in the woods -- lots of discussion since I was last here!
Tim, you're a real doctor! When I teased my mate about a prescription from "Dr. Tim" for a daily erection, I had no idea. Now that prescription will carry some weight!
Johnny, I feel for you. Only so much can be inferred from a few posts, and yet they indicate that you are pretty deeply enmeshed in a victimization-enabling pattern. But what really tears at me is a far deeper issue -- your seeming struggle to find inspiration and meaning in life. In this day of shallow values and gross materialism, so many young people find themselves in the same boat as you. As a counselor, I work primarily with people like you, and if I might be of help to you in some way, please contact me.
Re: the effect of testosterone and other hormones on Peronie's disease, my time in bird genetics and breeding impressed upon me the complexity of the interrelationship of the various components of an organism. For example, if there is a correlation between uncharacteristically low testosterone levels and the onset of Peronie's, it may be only one of several correlations, and perhaps not the critical one.
Which brings up my growing awareness about Peronie's disease: the more I learn about it, the more I view it as a syndrome rather than a disease. It appears to be akin to Chronic Fatigue syndrome, in that it may have a variety of causations, and what we view as the "disease" is merely symptomatic of these various causations.
Question: Is it helpful or hurtful to knead the scar tissue during erection?
Tamarack
Hey kenm, it looks like we're brothers in arms! :)
I've spent a bunch of time on aboutbfs.org and what's uncanny to me is the similarities between Peyronies Disease and BFS. No real known cause...lots of speculation about what to do to help it but no clear solutions...not life-threatening but highly annoying and worse in some cases...Interesting huh? FWIW (and this is the last I'll say about BFS here) I've found that an electrolyte drink called ELyte seems to help. It's like Gatorade but more electrolyes and no sugar, calories, etc. Hasn't cured me but definitely seems to help.
And for the record I do think there could be a connection here between these two things...just haven't quite figured it out yet.
Quote from: kenm on November 23, 2006, 10:35:55 PM
I thought I was the only one with BFS and Peyronies Disease. Interestingly I think my libido is stronger since I started taking udamin which is a presription vitamin specifically for prostate health. Another strange issue is cialis. Its only supposed to last 36 hours but after taking only 5 mg i can feel the affects for days. Then on might ask why do I need it. I think its a part safety blanket. I
Greetings
Has anyone here live in London and know of a urologist who specialises in this problem?? I have seen a urologist but was not satisfied with his knowledge. I even felt I knew a bit more about it than him at times! :) Need to go ASAP as im still in the first month and want to attack this early
Regards
Gibson:
I believe that Angus on here is from the UK, but not sure what part. Maybe he will read your post and answer you.
Old Man
I'm sorry if I led everyone to believe I'm from the UK... I'm a USA midwesterner. I have a Scot heritage but have lived my life in the States. I can't remember who exactly, but I'm certain that we've got UK people here... so... UK people, chime in please!
Angus:
Sorry about moving you to the UK! Somehow, I thought that from one or two of your posts that you were from Scotland.
Anyway, you have set me straight and we can move on from here. Midwesterner huh? I am from the very Deep South on the Gulf of Mexico.
BTW, I just sent a PM to a guy who wants to build his own VED. I steered him to you and Dr. Tim. He is on a limited budget and needs to save all the bucks that he can. Suggested that he look at your compilation of the VED thread posts and then maybe PM you or Dr. Tim.
Regards, Old Man
So I am looking for advice and I wasn't quite sure which thread to go to, hope this one is OK. I have been on the Pentox, L-Arginine, Cialis combo for a couple weeks now and I was wanting to keep a log of plaque measurements so that I can track objectively if there is any progress. This measurement is hard to do. Any advice on how to measure the plaques? Being inside the flesh this is not an easy task to do accurately.
---PJ
It is hard for someone to truly have an objective measure at home. I can think of no way to quantify plaque without imaging equipment. I guess you could get a micrometer (OUCH) :).
Liam
hello all,i`m new in this neck of the woods so please be gentle! as thats what got me into this mess in the first place!,i found this excellent site whilst researching my condition,power to the people that run the site,reading it alone has lessened my symptoms considerably!,i`m a 30 yr old male and have been blessed,cursed,afflicted with peyronies for about 10 tyrs now,i live in scotland uk,and have just taken the plunge(pardon the pun) to be referred to a urologist.my condition started due to an indelicate sexual encounter when i was 20,i had been in an 8 yr relationship,although we have been seperated approx 5 yrs now,one bone of contention(i gotta lay off the puns!) was how i viewed my condition,i guess youre all well acquainted with the ups downs ins and outs of the condition.when this first happened during intercopurse i felt a pain and noticed my penis had swollen to something approximating a norwegian spruce, i applied an icepack and hoped for the best,i avoided sex and arousal for a few days,and when the time came i found i had a bend to the left in my penis,i went to a doctor,a young female student doctor not much older than myself who was more embarassed than i was about it!,and proved somewhat fruitless,i went to another doctor also female who giggled and smirked,i picked my shattered male pride off the floor and went to see a male doctor,he mentioned peyronies but he admitted he knew little about it,there was precious little info about it in the pre net days,and no course of action was taken other than to see if it improved naturally,my girlfreind was always saying i should get it fixed etc,which i initially and perhaps classically took as rejection,it is only with many years retrospect i now realise she was concerned about how the affliction affected me,emotional isolation,moodiness,loss of libido and sexual curiosity etc,it was very painful for the first 2 yrs during sex,tho there is now no pain,sometimes lovemaking was very satisfactory,sometimes not so,and it definitely changed me to a degree,i have occasional probs with erections but have found viagra and cialis somewhat beneficial,tho i am cautious about dosage,i have never been prescribed these as i thought an otherwise fit and healthy male would be laughed out of the surgery for asking for these drugs,lest the doc think i`m a sexual chancer wishing free recreational drugs on the nhs,i have obtained these drugs "on the street" as it were,they are expensive and hard to acquire,and damn near ever guy wants them peyroniies ed or not(the male psyches like that) however now i`m more confident about treatments and doctors etc i will be asking my gp about this,tho i prefer to wait until i`ve seen my urologist,i hit a point in my depressions where i realised i was letting a few pounds of flesh ruin my life,i reflected on the irony of allowing that particular body part to govern my existence whilst neglecting the organ that beats in my chest or the one that ticks away in my cranium,i learned to approach my condition with humour,which helped considerably in communicating with sexual partners about it, i was always terrified my condition would make intercourse unpleasant or uncomfortable with my partner,but if she is relaxed enough it would appear to make little difference,i was with one girl who found the condition wonderful and couldnt appear to get enough of it! apparently it hit spots a mere normal nob could not reach! anyway i`m glad to meet you all albeit virtually,and was wondering if anyone could advise me what to expect from my upcoming visit to the urologist,forewarned being forearmed etc i am fairly in the dark as to treatment options etc,tho i have had a good look at the site which has been a huge help in the way of probs shared probs aired etc,for many years i was in a very dark place about it all,but certainly am not now,it does still affect me psychologically to some degree,but i`m far more aware of it as i get older etc and better able to handle it,my confidence has returned,and ive become somewhat attached to this unusual condition!
ps; i recently read a biography of 60`s counterculture icon allen ginsberg,and he had peyronies too,so along with bill clinton and the english footballer david beckham,we`re in distinguished company chaps! gives a whole new dimension to the oft repeated uk phrase "bend it like beckham"! for our us counterparts,beckham was renowned for his curved goal shots :)
I just want to go on a mini-rant. I read this article (http://www.theaustralian.news.com.au/story/0,20867,21004478-30417,00.html) recently about the exciting new developments in combating Mad Cow Disease, which in it's conclusion, states:
QuoteAt least 180 people worldwide have died after eating meat infected with mad cow disease in the past two decades.
My gripe is, why does a disease that has affected 180 people in 20 years get to benefit from cutting-edge technological advances? Peyronies Disease sufferers number at about 3% of
all men, yet gets so comparatively little attention. Granted, Peyronies Disease has never killed anyone... But still, I can't help but feel a little frustration at these skewed priorities!
Myrddin,
Not trying to pick apart your stats but... I think the newest estimate from Dr. Levine said that 10% of people suffer from peyronies disease. This was a significant rise in the percentage from past estimates. Being Peyronies Disease sufferers we gotta help our cause as much as possible and use the most up to date statistics when we are out there talking to urologists or whoever. It seems as if peyronies is finally gaining some steam in recgonition and lately with the advancment of collaganese. I've been watching our forum statistics grow and it seems like people are coming out of the woodwork with peyronies- tons of new people. This is actually encouragining.
Myrddin, minus your stat, your point is a good one, kind of reminds me of all the attention restless leg syndrome gets as well...
ComeBackid
i think one of the problems of peyronies,concerns lack of communication,for every man willing to stand up and be counted,there is likely to be 2 or 3 men who will stay on the sidelines and hope it goes away,which was my initial reaction,i have never in day to day conversation ever come across the topic,oddly however my current girlfriend was aware of the condition,and several of her girlfriends are also aware of it or have experienced it by proxy,women are traditionally far more communicative creatures,i estimate and predict many more cases of men intheir early 20`s or mid 30`s will be diagnosed,i ascribe this to viagra`s current status as a recreational drug along with cocaine and ecstacy,in the modern "zeitgeist" many young men view viagra as a status/lifestyle drug a rite of passage thing,i long grew out of illicit drug use but i was first afflicted with this condition as a rampant 20 yr old during a bout of intense cocaine(anaesthetic) and very pure mdma(ecstacy extreme stimulant) fuelled sex,with hindsight throwing viagra into that mix is surely tempting coitus fracturous!
another feature could be a lack of peyronies "role models",many celebrities etc regularly speak outv about breast and genital cancers etc,whereas in the case of bill clinton and the english footballer david beckham.whom i mentioned in a previous post,both these mens conditions came into the public realm as a result of extra marital affairs,and the women they cheated with mentioned the condition as a way of proving their affairs thus maximising extra large payments from newspapers etc for the lurid details,if a figure like beckham was to publicly acknowledge his condition,and bring it forth in the interests of public education,we would all be better off,however in todays celebrity fixated culture most likely the condition would become fashionable like shaved eyebrows or body piercings! and every man would want one,(imagine the adverts "hey youth of today,you too can bend it like beckham,with new improved peyronies,available at stores near you,only £900",some capitalist pig would be sure to make some coin off it!)
Some thoughts, Myrddin, your point is a good one except to a degree, however we must be fair and consider that madcow disease if not controlled, has the potential to spread as a contagion and kill many, in addition to devastating food supplies. On the other hand, restless-leg syndrome is very common, open to general discussion by those affected, and thus constitutes a large market. We cannot be silent and compete with such conditions.
On the subject of how many men had Peyronies Disease. While I reject the 1% figure, at this point I also have a problem using a 10% figure. What does that figure mean? What is the documentation? Does it mean that out of a 100 men of all ages randomly selected that 10% manifest symptoms of Peyronies Disease? Does it mean that 1 out of 10 men will develop symptomatic Peyronies Disease if they live to 80 years old? The problem is that to my knowledge, Dr. Levine or no one else has given us firm numbers based on objective random analysis's.
Floweredup,
I have often thought about what you have just said- we have no role model with peyronies. But then again who is going to come out in the limelight that is from hollywood and say " I have a bent penis- its called peyronies." Wow I could see it now on saturday night live, jay leno, etc... they would get shredded- hell thats just asking for it. I've thought though how much publicity an old fart like bill clinton or bob dole could bring- for you guys in england a "mate" like beckham. The more and more I think about this it just seems to unrealistic. I think to gather steam and bring attention we almost need a porn star like ron jeremy or someone who could come out and say " I have this disease and I'm fighting for all males around the world- his super size in my mind would somehow lend to his credibility and I doubt he would be joked about as much as say a bill clinton or bob dole. Anyhow, at least we got hope, it keeps me going...
yes i know exactly what you mean ComeBackid,the nearest equivalent i could think of would be john wayne bobbit,but his story was at the extreme and bizarre end of the spectrum,being an irish scot i`m a celtic fan,so i wont start about english football!,beckham means little to me,but he`s notoriously inarticulate to the point of autism, wears skirts lives a ridiculously ostentatious lifestyle and is married to a ludicrous ex pop star wife who has repeated breast augmentations etc and the demeanour of someone with a lemon wedged in their bottom,and is now famous for shopping,he would most certainly not be an ideal poster boy for peyronies! ron jeremy probably would be ideal,he seems quite down to earth! something that has shocked my innate scottish frugality is how much money the guys in the us have to fork out for treatment,for all the faults of the british nhs treatment is free for all,regardless of employment or not,we have a standard prescription charge no matter type or amount prescribed which would equate to roughly $11,we have private doctors etc but with rising taxes,utility bills blah blah most of us prefer to err on the right side of bankruptcy,but indeed as for peyronies role models in the public media arena,i think we shall see pigs fly first
ComeBackid,
I don't know if Bill Clinton is an "old fart", but I almost certainly am, since I have absolutely no idea who Ron Jeremy is. Do you think I can be redeemed?
Scott
Scott,
You are redeemed by not knowing. He's a former (I guess) porn star who does a cheesy infomercial late at night for "male enhancement" product.
I believe the product he pushes is enzyte or something like that. Basically the scene is an interviewer talking to a "husband" and "wife," the wife says how much more satisfied she is yada yada, its ultra cheesey, then they throw in jeremy, one thing I noticed is they avoid the words "penis enlargment," and say words like "natural male enhancement," " better performance," and "endurance." Actually a more credible reputable porn star would be one like Peter North. Maybe sometime soon "The Donald," will just admit he has peyronies and pour hundreds of thousands into research :D
I would respectfully request that all go to the PDS home page and re-read the awareness page. It's easy to forget the root of the problem being discussed here. As I said in that page using a famous quote from Pogo years ago (for those of you old enough to remember Pogo) "I have seen the enemy....and it is me".
As far as the 10% number, if you consider every man from birth to death, I think that the number may be very accurate. However, once again the reason we don't have solid numbers is the reluctance of men to come forward with their condition. There is no greater service the members of this forum can bring to the fight against Peyronies Disease than encouraging Peyronies Disease patients to come forward with their disease.
My Best,
Larry
hey ComeBackid,we would know if "the donald" had peyronies,if he did then trump towers would lean like the tower of pisa!
hello gents!!
Just a quick question. My first urologist suggested I get as many erections as possible incase i do have pyronies. I am taking a 1/4 pill of CIALIS as directed by docter each day. At night I wake up all the time with erections and
SORRY PRESSED THE WRONG BUTTON AND POSTED THE ONE BELOW!! HAHA
Let me continue. I am worried that I could be doing damage with having erections at night for too long..do u think this is possible?? Also getting as many erections as possible could not be too safe either.. I get slight pain after ejaculation this worries me a little but this is not nearly as bad as it was a month ago. Off to another docter soon to see what he has to say maybe referal to ANOTHER urologist!!ahhhhhh....frustration
Kind regards
Hi,
This is my first post. I am hoping for some insight and some direction for my situation. I am in my mid 20's and have developed pain in my penis along with a slight indentation on the top left near head. This situation started about 8 months ago after i bent my penis to the right in the flaccid state. I was not rough when i did this. My penis curves to the left about 30 to 35 degrees and has always been this way. When i bent my penis to the right there was no pain at all. The next day when i woke up it was very sore. The soreness went away for the most part about a month later. Then one day when i was masterbating i felt a pin prick on the left side of penis. That was the beginning of the worst pain i have ever experienced. It has been with me in some capacity for about 8 months now. The indentation came very suddenly sometime within a two week span about 4 months after i felt the pin prick. I gave my penis a rest for two weeks along with taking vit e, vit c, and some enzymes and when i had an erection i noticed the indentation. I have been to three doctors, one being a specialist and they all say there is no scare tissue and that i do not have peyronies. I was so relieved when they said i didn't have what i feared i didn't push the pain or indentation issue.
The indentation does not change the direction of penis but it is there and is still painful, some days worse than others. I am wondering what part of the penis would have to change for this to happen? Should i go back to a doc and have an ultra sound or an MRI? I am embarrassed, confussed, and frustrated. It seemed like the docs were insinuating that the pain i was feeling was all in my head. Any thoughts or suggestions would be greatly appreciated. Impala
Dear Impala,
Welcome to the site!
I have found that sometimes docs will either insinuate, and cetainly start to believe that something is either "all in the head" or "fake" when they are unable to understand it. I see kids with lung disease and it is asonishing how often I hear that story - "He said the cough wasn't bronchitis since it didn't respond to antibiotics and said it was a habit cough" (even though the patient coughed in his sleep); or "He's a happy wheezer - why are you insisting that he get medicine? Do you want him to be sick".
This problem can be worked out quite easily. Go to another doctor.
To be sure that you are not contributing to the communication problem that you are describing, do the following:
Make a list of the physical findings and a timeline of appearance. A "dent" is a finding of Peyronies Disease, IMHO - if it has appeared after an injury of any sort.
Secondly, pain is abnormal. Write down when you feel the pain; where it is located; what makes it worse and what makes it better; describe how it feels (sharp, dull ache, stabbing, throbing, etc).
Tall your story in a neutral way, like you did here - and take your time if you need to. You can say that it is hard for you to talk about, and that you fear that previously you have not been able to describe the problem adequately before the visit was concluded, and ask for enough time to talk when you make an appointment (also be sure to discuss with the scheduler that you need time to discuss more involved matters and need an "initial" or longer appointment slot when making the appt).
Weolcome and good luck. It may be Peyronies Disease or maybe not, but in any event it is not normal and needs some sluthing to figure out what it is to be fixed. Good luck!
Tim
Does anybody buy Cialis over the internet? Could you lead me to a honest site at an honest price?
Thanks
I have no faith in internet drugs. It seems that anyone dealing in such an unprofessional practice would be unscrupulous by the very nature of the business they re in.
I am interested in any sound information to the contrary.
I agree but I thought maybe someone out there has dealt with one that might be reputable? I bought some about 3 years ago without a prescription and I like to use it on long/special weekends (pleasure) so I really don't want to get a prescription.
Hey all. One of the things that I've noticed is that throughout the day I'm often subconsciously clenching my PC muscle (the muscle you use to stop the flow of urine, too lazy to look up the spelling :)). It's definitely stress-related (like someone who would clench their jaw without realizing it). I don't feel like I'm under a ton of stress right now but I am coming off a period of pretty heavy anxiety and I wonder if some of the physical habits are still with me.
Anyway, I'm wondering if anyone else has noticed this (or will now that I mention it). This seems like a strange theory but I wonder if clenching this throughout the day could lead to less circulation to the area and therefore contribute to Peyronies Disease. It's a little out there but given how important the PC muscle is in terms of sexual health, etc. I wonder if this could be a factor. ?
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1743-6109.2006.00404.x?prevSearch=allfield%3A%28peyronies+2007%29 - Measurement of Penile Curvature in Peyronie's Disease Patients: Comparison of Three Methods
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1743-6109.2006.00397.x?prevSearch=allfield%3A%28peyronie%27s+2007%29 - Study of Interstitial Cells in the Penis: Human Study
Liam,
Let's see...according to the references:
QuoteOur results show that the degree of curvature measured using vacuum-assisted device and AHP (At Home Photography) is underestimated as compared with the gold standard ICI (intracavernosal injection)
That means that I'm really more than 70 degrees! What a depressing way to start the week :o. Now, what exactly is a
goniometer?
Thankfully the lady whom was going to take the library comp allowed me only a few more min because I told her what I was doing. She is about 30 something and has never heard of Peyronies Disease, but her face was almost white with the fear of the unknown. She thanked me and i asked her to inform her husband....
for those who are weary of the fact that vitamins are on the target list for the international communites war on health (operation population control) here is a breif excerpt from the news.... it is important to note, that you are not less human or less of a man for having Peyronies Disease. don't be afraid, be angry. for the cure is out there and we just haven't been allowed access.
don't believe me. do your own research, then make a conclusion no your findings. it doesn't matter if your vitamins come from any of the 50 states, your illegal income tax collectors don't care about you...
'we shall prevail!'
***********************************************************
HERBAL HOLOCAUST
Underground drug dealers may soon be peddling illicit Vitamin C and other dietary supplements, including herbs. Police may soon have the authority to break down your door and search your fridge for health food. Health enthusiasts could one day be rounded up like prisoners of war and have their homes confiscated and their livelihood destroyed, like marijuana users and growers.
War on Health
In some countries, the War on Health has already begun. In Norway, Germany, and Australia, Vitamin C and other health supplements are already illegal in moderate doses, and weak tablets can only be bought over the counter for, on average, 18 times the price we presently pay here in Canada. Norwegian vitamin distributor John Hansen reported being chased by undercover agents for his part in selling Vitamin C above the 200mg limit.1
In South Africa, vitamin distributor Clive Buirski recently had his shipment of vitamins seized by customs authorities intent on preventing them from passing into the hands of alternative health practitioners.
In Canada too, the process is well underway. In the past decade, the Health Protection Branch (HPB) has made over 100 health food supplements illegal, 23 of which are still available in US stores. One of these "dangerous" herbal remedies still available in the United States is DHEA, a derivative of wild yam extract which has been shown to promote longevity and strengthen immune functioning. With less side-effects than a cup of coffee, DHEA has been a controlled substance since December 19, 1996, under changes to legislation suggested by the HPB.2
If you say it's good for you, it's a drug
The Food and Drug Act defines a "drug" as including any substance "for use in the diagnosis, treatment, mitigation or prevention of a disease, disorder, abnormal physical state, or the symptoms thereof, in man or animal." This incredibly broad definition can be interpreted to include vitamins like Vitamin C, used to treat and prevent the disorder of scurvy, plants and herbs with therapeutic uses like garlic, ginger and peppermint, and even ordinary food and water, since these act to prevent the abnormal physical states of dehydration of starvation.
The HPB has decided that once someone claims that a vitamin or herb can have a therapeutic benefit, it becomes a drug. This means that peppermint and ginger tea would be considered a drug if the brand name or label suggests that it could be used as digestive aid.
It's not even necessary for the person selling the herb to make a health claim for the product. As long as someone, somewhere has claimed that the herb or vitamin can have a health benefit, it is considered a drug. In fact, some herbs have been banned from sale by the HPB simply because their names indicate a possible therapeutic use. Eyebright, cramp bark and feverfew have all been prohibited for sale in Canada, simply because their names denote their traditional medicinal use.
Jean-Marc Charron, Chief of the Drug and Environmental Health Inspection Division of the HPB, warns of the penalties of being caught trying to sell any of these herbs or vitamins that have been deemed "drugs" by the HPB:
"The penalties for trafficking and possession for the purpose of trafficking are severe, the length of imprisonment ranging from a term not exceeding eighteen months on summary conviction, to a term not exceeding ten years on conviction by indictment."
Mlassard... I reviewed your other post today and the one from December 30. Although you may have a point - it is murky, and that is being generous. I have never seen a more irrelevant, disorganized, jumbled, flight of thought post on this board, ever. I can only imagine what the poor lady in the library was thinking.
Hey guys,
I've recently had a major setback in my treatment. After sticking with the VED and adding in pentox a little over two months ago, I've recently had some setbacks. I seem to be losing more sensetivity in my penis, I never had this before, my penis is getting less sensetive to touch and orgasms have no intensity. Besides this I also notice a hardening of my penis all over even more than before. I also can't really hold much of a full erection anymore. All these setbacks have come over the past two weeks kind of all at once. Initially I saw an increase in flaccid size from the VED, when I added the pentox I saw an even bigger increase in flaccid size and more full solid erections that increased size in the erect state as well. This is pretty depressing, especially since the pentox is supposed to stop progression of the disease, nonetheless I will still stay on the medication and stick with it for now since there is no other hope on the way anytime soon.
ComeBackid
blah.
so the girlfriend broke up with me last week. which sucks because this whole peyronie's thing wasn't an issue with her at all. meh.. F~@< her.
so being that I'm a 20something I guy, and a dj, I did what any 20 something guy, would do. I hit the club. Ended up hooking up with this chick and we ended up back at her place. Which is where this story takes a tragic turn.
The whole time we're fooling around I had a good rock hard erection, but as soon as it was time to get down to business I just completely lost it. I don't know if it's psychological or what. I kinda have to assume it was, because, like I said, I was ready for business just a couple minutes prior.
Fortunately, she was cool about it, especially after I explained the peyronie's thing. still kinda sucked tho. yeah, the much needed ego boost was great, but the soldier standing down when it was time to perform was and is frustrating.
By what you said, the plumbing seems to be in order.
Jon,
Sorry to hear about your story my friend. I seem to be losing all feeling in my penis it is going numb now after 8 years and I can no longer really hold a full erection, I think peyronies has got the best of me finally. Hang in there buddy it can get A LOT worse!
ComeBackid
ComeBackid,
I am sorry to hear of your bad news.
Loss of feeling or sensitivity in the penis is certainly not typical of Peyronies Disease. I don't think I have ever heard someone connect the two in the tens of thousands of posts I have read. I know I have never heard of a medically confirmed connection. Are you sure something else is not going on with your condition?
Hawk,
I'm not sexually active so I couldn't have any STD's or anything. I recently had a TB test that was negative as well. I still feel sensation during orgasm, but the buildup to that my penis is pretty numb and dulled. It reminds me of back when I was on anti depressants and it was just really hard to achieve ejaculation. I highly doubt it is anything other than my peyronies. More hardening of the plaque and the inability to hold an erection without constant frequent stimulation comes at the same time. My whole tunica must be covered in plaque, the whole thing is hard all over.
ComeBackid
Quote from: pudder135 on February 10, 2007, 01:24:12 PM
It reminds me of back when I was on anti depressants and it was just really hard to achieve ejaculation.
ya know, that never occurred to me, the anti depressant angle, because I'm on wellbutrin.
but there is a happy ending to the story, pardon the pun, that came later in the weekend. :)
Welbutrin is known for have less sexual side-effects than most antidepressants
right, i realize it's not a common side effect, but stack peyronie's on top of that, and some degree of performance anxiety and well.. it doesn't make for a good combination. I allow that it i was likely mostly performance anxiety, and just anxious about how well crooked penis would be received, figuratively and literally.
Wellbutrin is a great medication. We often use it for people with schizophrenia who are far too sedated from their anti-psychotic meds and suffer from negative symptoms like depression. Its main problem is that it tends to cause increased anxiety and sleeplessness in some individuals. In my experience it is not inconceivable that it could contribute to performance anxiety.
Depression itself could cause many of the problems discussed, huh. Thats one of the problems figuring the whole mess out. ???
Liam
ComeBackid, Here is a quick trouble shooting thought or two.
First, check to see what the shape of your penis is when it is totally hard. That is, when it is sucked to life by the VED, determine how much angulation, denting, etc, that you have, and contrast that to what you used to have. What you see is what you get. If you are unable to achieve erections that look like that, then you may have some erectile dysfunction, but that does not mean that your Peyronies Disease is "worse".
If your erection is not significantly different, then your placque has not progressed, nor is it covering the entire tunica albuginea. Instead, the quality of your erections may be worse, and when you are soft, your penis is harder. That does not equal more placque or fibrosis!
If in fact things do not appear to be much changed when erect with a proper erection then the problem is getting an erection. Moreover, what your penis feels like soft is NOT a good indicator of what your Peyronies Disease is doing. Given that stress will increase your adrenaline, and that will increase the shrinkage feeling (and hence the hardness feeling when flaccid), then it is entirely possible that depression and anxiety is causing all of your problems currently. given that you have shared with us that you have dealt with such feelings, this is a reasonable explanation for some if not all of your symptoms.
As I said in my PM, I would consider a 5 day break from Pentox, but I wanted to add that you might be at risk of over interpreting the changes you might feel off of pentox and conclude it is bad for you erroneosly.
Tim
Tim,
After doing my VED tonight and closely examing my penis in the B cylinder, it appears to fill up the same shape, size, and amount as normal. It appears that my problem is the ability to have erections fill up to the proper size. Besides this the tunica does feel like it is hardening, and there is a loss of sensetivity that has come in varying degrees by the day. I'm going to stick with the pentox for now, but I may go off L Arginine, and eventually onto the Vasoflow. There still seems to be some questions regarding L Arginine and if its really good or not for peyronies. As far as my peyronies, perhaps it is not spreading or worsening, but merely hardening. It is tough to say, and with no doctors will to do the ultra sound I have no idea if I have calcifications or frank bone in my penis.
ComeBackid
I just wanted to post and say:
It has been very helpful to me over the past year to have this board to come to. (Yeah, I lurked for a while before becoming a member) The most important thing is that I don't feel like I am the only person with this problem. Without the contact here I would probably feel quite a bit worse and look upon what has happened to me as if it was more 'freakish.' I have tried to get my wife to read the forum, but as far as I know she hasn't yet. I read the forum pretty much every day even if I don't post much. Just having it here is a great help to me. Anyway to those who put the effort in to make this happen: Thank-you
----PJ
Thank you for a kind post.
Liam
Hi PJ.
Please continue to encourage your wife to register and check out the Ladies Room. I am sure that she herself could use some encouragement from some other wifes and partners that are dealing with similar issues as she is. This is a very hard topic to discuss with just anyone and here we can truly say that we understand.
It's great that you are here and I am glad that you have found a place to get information and support for yourself. You can now see what a value it is for you and we would like to do the same for her. If you would like I will give you my home email in a PM that you could pass along to her.
Blessings to you both,
Christine.
Hi everyone,
Some of you may remember me from Nov/Dec when I thought that I might have Peyronies Disease. I ended up going to the urologist twice and both times he told me he was positive that it's not Peyronies Disease and that it's nothing serious.
Symptoms: When flaccid it feels like there is something semi-hard in the shaft of my penis, at about the middle. It feels like a band of tissue that is harder than the other. It isn't rock hard, but it is a bit firmer. I'm very tall and skinny and I get cold very easily. When I'm cold my penis looks kind of odd. The skin kind of wrinkles up in this band area. When my body is warmed you don't really notice these things. As for achieving erection: As my penis is filling with blood there is usually some "hourglass" effect, but this eventually goes away and a normal erection forms. It depends on how hot or cold my body is. The erection is definitely normal and I don't think I'm losing length or girth. I'm somewhat self-concious of what my penis looks like sometimes when it is in the semi-erect state. There is no pain involved or discoloration or swelling (and there never has been in the past).
Doctor's diagnosis: He seems convinced this is not Peyronies Disease and I tend to side with him. I don't have the tell-tale symptoms and he is also a Peyronies Disease specialist. I asked him what he thinks happened and he believes that there was maybe some sort of a tear and blood leaked out into a different part of the penis, and that's what I'm feeling that is harder. He said it's nothing to worry about as long as there isn't pain or curvature.
What do YOU think? I can live with this situation if it doesn't get worse. Erections are normal and there's no pain, and I guess that's what counts. I am kind of self-conscious about what it looks like otherwise. Can I cure or alleviate this problem? Does the doctor's diagnosis make sense? Can anyone elaborate? Should I get an ultra-sound?
Thanks in advance.
JohnnyBoy,
Back when I first got peyronies, my flaccid penis was firmer, but I had lost absolutely no size, and my erections were straight. Seeing another urologist wouldn't hurt, also getting an ultra sound if you can wouldn't hurt either, I forget the right kind to get (Tim knows). Constant checking of your penis can lead to false conclusions and just isn't healthy, so you don't want to do that at this point. I would see another urologist or try to get an ultra sound from the first doctor you saw. I tried to get an ultra sound and no doctor I saw would give me one, except Dr. Mulhall, and he wanted to inject my penis which I will not do, and wanted me to come back to Manhattan( won't be possible for me). If one can get an ultra sound, this will not hurt your penis so go for it. Some may tell you to forget about it, but seeing that it is your penis, I'd see another doc just for another opinion, especially if you just have a small copay and good insurance. Good Luck.
Quote from: Hawk on February 10, 2007, 08:26:12 AM
ComeBackid,
I am sorry to hear of your bad news.
Loss of feeling or sensitivity in the penis is certainly not typical of Peyronies Disease. I don't think I have ever heard someone connect the two in the tens of thousands of posts I have read. I know I have never heard of a medically confirmed connection. Are you sure something else is not going on with your condition?
Actually I have a similar problem. When a curve started to develop I started to have less feeling, especially on the lower (base) & middle part of the penis. While there seems to be nothing visible of Peyronies Disease in my case, not even on ultrasound, i think practically whole my tunica consists of plaques, as it feels very hard. I'm now one month on Acetyl-L-Carnitine, and in the very first 2 weeks i felt a very good response, my penis felt 'warmer' and there was a noticeable improvement in curve. But now already Peyronies Disease seems to have adapted with a vengeance, it's hard all over again (maybe even more), but i especially noticed a very big loss in girth (which is perhaps even worse then loss in length) over one month time, which i didn't have before. I did already experience a loss in length before. I only take about 1000-1500 mg per day, but still, it's not very hopeful. I'm gonna take it for another 2 months but the loss of girth doesn't sound very hopeful.
Sorry, I don't mean to bump threads up, but does anyone have any comments on my previous post?
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".
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.
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
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.
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.
Quote from: PlaqueFighter on March 04, 2007, 02:22:58 PM
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.
Read this article today. Discusses prostatectomy and scar prevention.
http://www.bcm.edu/news/item.cfm?newsID=817
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.
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
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?
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
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
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:
QuoteI 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.
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.
Johnnyboy,
That was not so much disrespect as it was sincere dismay. I have no idea what else to say. maybe others do.
Not from me. I think Hawk pretty much covered all the bases.
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
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. :o
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.
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
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.
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
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
meanmrmutard:
Sent you a reply relative the surgical removal of the epydidimis gland in a PM.
Old Man
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
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
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
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.
dr-osama@link.net
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. abella@urology.ucsf.edu
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. shafik@ahmedshafik.com 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.
glhsu@tahsda.org.tw
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.
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
Quote from: litningwlf on April 03, 2007, 12:23:40 AM
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
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? :o
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.
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!
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.
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
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?
Thanks Tim!
QuoteWe 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"?
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
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
Well said Tim and George.
Good Luck Wolf!
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.
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
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.
QuotePeyronies 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.
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
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
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)
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
Bob
Im in the same boat as u my friend..im young and very intimate guy still with a long distance girlfreind who is being very understanding at the moment. All I can say is get ur head right while we trying to find a way to fight this..Lord knows sometimes I am completly overwhelmed by all that has happened to me but the mind is the most powerful tool availabke and any healing is not going to take place with a mind that is depressed/anxious....FACT.....im battling it just like u and hoping for a miricle...keep me posted as i will keep u posted.....take medication and keep experimenting..I honeslty belive that nothing will make it worse other than more trauma to the penis.
Best of wishes and I PROMISE IM FOR REAL AND HERE TO HELP so keep me posted
hopeful gibson
Thanks for the advice. Dr. Lue actually only suggested taking the pentox. I asked about l-arginine and he shook it off. Never gave me a script for cialis or viagra either.
I think the reasons why the normal healing hasn't taken place here is because while I am only 26, I have an abundance of health problems including interstitial cystitis (an inflammatory bladder condition) and it keeps me from getting a good night sleep. I find it interesting that the more I post and read online, the more young people I see with similar issues to mine. I'd love to know the concrete solution and then dispense that info to everyone.
I also think the fact that my erection was harder than it had ever been before because of the injection prior to the ultrasound and the fact that it pretty much bent sharply in a couple of places didn't help matters. While the pain was not "excruciating" and my penis didn't swell up like an orange, the erection faded right away. That sounds like a penile fracture or at least a microfracture from everything I've read. Also, I was having impotency problems the week prior to the ultrasound, so that couldn't have helped.
I bring this up because in may 2006, I bent my erection sharply in my pants and lost it pretty quickly and was impotent for like a day. But I took a small dose of cialis (which I got from a doc because of a slight curvature) and everything bounced back. I lost length and girth and developed more curvature, but the erections and the tissue were all normal. I had rigid morning erections and the tissue was stretchy in the flaccid state.
If I woke up tomorrow morning with a rigid erection, and once it subsided I could stretch the tissue in the flaccid state, I would scream, "Thank the lawd!!," never go back to a urologist and be overly careful each and every time I had an erection with or without sexual activity.
For some reason now, cialis only gives me a rigid erection with a lot of stimulation. In that previous situation in may, I took the small dose of it at night and woke up with a raging hard-on in the morning.
I think this was one injury too many. Now the question is, will I have to be on medication for years to get a rigid erection or will I eventually get back to normal? My most recent blood flow ultrasound results indicated things are pretty bad, so hopefully the pentox can permanently improve those. Is that possible? Is that what some of you mean by heal? I hope so.
For the love of God, hopefully I start showing signs of steady improvement like Dr. Lue felt I would, b/c I want to stop thinking about this 24/7. As much as I'm upset over the loss of size, which I know isn't coming back, or the months of turmoil, I'd get over those in a heartbeat for a fully functional, non-shrinking penis right now.
Hope I'm continuing a helpful discussion of this condition which is afflicting more than just myself. If not, then thanks for letting me use this forum to seek opinions and get stuff off my chest.
I could try to encourage you at length, but I believe that George's post has EVERY single bit of important and relevant information that you need to heal as completely as possible. I see no point in reiterating it.
One of the hardest things for us all to do is to live with the "What if's" in life. Oftenwe put a great deal of energy into anxiously worrying about what if, only for it to not turn out the way we thought it would. All that energy spent worrying!
Right now, it's funny how life turns. My daughter (a teenager) is battling depression, and I am sitting here catastrophizing like crazy. I have her living on the streets in 3 years, in my mind. I am VERY anxious about it - in fact, I can share with you that the pain of this worry is greater than that I had at the onset of Peyronie's, which hit me when I was 21 years old. So do what I say - not what I do!
Really, though, experience has taught me the futility of thinking this way. I am trying this morning to come up with a gratitude list. Today, I have to try to come up with things my daughter did yesterday that helped her (because she did some things that did not help her, and I am pretty angry about those choices). Similarly, you might be able to comprehend how it could have gone - you could have decided that you were fine (based on your injectable erection, and not injuring yourself in the clinic) and gone out clubbing, ended up having rough sex, and injuring yourself worse.
IOW, there are MANY ways that life can turn out. The way your life is right now is not the worst that it can be - but it is a challenge.
It might help to:
1) simply accept that it is not the way you want it to be right now,
2) accept that you have a plan of action that might (in fact, probably will) help you get better,
3) attempt to make up a list of gratitudes about your life every morning,
4) try to journal in the morning before you have done virtually ANYTHING ELSE by writing three pages at least in a journal (we call this the "morning pages",
5) set aside some time each morning to meditate (5-20 minutes) to calm you mind and to prepare for the day,
6) REREAD George's post regarding diet and EXERCISE - even a walk on a daily basis will promote healing and less mental pain,
7) If it works for you in your heart, pray for God's will to be done in your life, and for it to be revealed to you what this is happening for. I say it like that because I do not think of God as being a pinch hitter who comes in to bat when we are tired and to save the game! I am not religious, but my belief that there is some guiding force to the universe has helped me at times,
Finally, come here and rant all you want. You are articulate and in pain - I expect to hear more from you, and that is OK. One thing we can offer when the medical stuff is not helping for sure yet is to offer support for how it feels. None of us ARE YOU, but we have suffered in similar ways, and if you recall how we are all similar, it will help you do better as you walk down the road that you are already on.
Tim
ps - for all the anxiety I have had about my erectile quality, new "dents", progressive disease and so forth, I note that last night love making happened without cialis or viagra with great erectile quality, and the path I am on finally seems to be helping me get better. So hang in there - it may take a while but it can change.
Guys, thanks again for the encouragement. Tim, I wish you, your daughter and the rest of your family the best. I wish I had a support system like that; it would make this problem exponentially easier.
My whole thing is cause and effect. I'm likely going to see a psychiatrist tomorrow to help me calm down with this. The medicines he'll give me will aim to treat the anxiety/depression. For some people who see psychiatrists, the "problem" is the anxiety or depression. For me, that's just a byproduct of the real "problem," which is this physical condition.
I understand your point on "what if's." I've heard it from pretty much all my friends. But it's extremely tough to know that a two-minute period in my life has changed things so much. It's not like I contracted a disease which was out of my control. I got up from that ultrasound with an extremely rigid erection, which meant I was OK. The next few minutes, where I believe the doctor was negligent and where my brain apparently shut off, ruined that.
Bottom line is, I want the progression to stop. If the past is past and I can't go back and turn my brain on and adjust my erection before hopping on the doctor's table at his orders, then I at least want to stop losing size. That is my No. 1 goal right now. The erection stuff can go on a backburner because I don't have a girlfriend now, but I've read from some young guys that they ended up with half their original size after the doctors told them they couldn't find anything on the scan.
But here's the problem, which I've mentioned before: I can't physically tolerate the pentox. There's no proof the pentox will bring the tissue back to normal and stop the progression, but at least there's a chance it will. I'm having a difficult enough time eating at the moment, so I have no idea how to stomach the pill. Mild side effects are one thing, but throwing up all the time is another.
I feel I am nearing a crossroads: either I'm going to go completely nuts, lose my job, my friends and more of my penis, or somehow I figure out a way -- which I can tolerate -- to stop the progression of whatever I have and start living again and have my friends actually want to pick up the phone when they see my number on the caller ID.
BTW, Tim, being married, I was curious what your take and also anyone else's take is on this: If this continues to progress and prevents me from ever having sex, do you believe that most women would be OK with just receiving oral sex? In other words, would a young woman in today's day and age of Sex and the City and crap like that be willing to date and possibly marry a guy if she knew they couldn't have intercourse?
I know my fear and anxiety produce a question like that, but my current symptoms and the lack of answers from the doctors make me start to wonder.
From three diffeent posts:
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.[/
But it's extremely tough to know that a two-minute period in my life has changed things so much. It's not like I contracted a disease which was out of my control. I got up from that ultrasound with an extremely rigid erection, which meant I was OK. The next few minutes, where I believe the doctor was negligent and where my brain apparently shut off, ruined that.
......Also, I was having impotency problems the week prior to the ultrasound, so that couldn't have helped.
Before the injection, you were having a penis/erection problem that sent you to the doctor. Why are you blaming the doctor? The symptoms you are describing now seem to be, if anything, a continuation of the problem which made you seek help in the first place. What about the IC you have? Both take place in that "special area"...more or less. Check this article:
MALE INTERSTITIAL CYSTITIS—TIME FOR A CHANGE?
Jordan D Dimitrakov*, Plovdiv, Bulgaria; Dorian Y Dikov, Lagny-sur-Marne Cedex, France
Do men with nonbacterial prostatitis and prostatodynia really have IC instead? Some researchers think so. Previous studies using cystoscopy with hydrodistention have shown that up to 70% of these men have bladder abnormalities that meet the NIH-NIDDK criteria for IC. In addition, the symptoms of both conditions are similar, including irritative voiding symptoms, pain, sexual dysfunction, and accompanying depression and anxiety. These investigators set out to test for IC in men with confirmed chronic pelvic pain. The men were given a complete battery of tests, including cystoscopy with hydrodistention, the potassium sensitivity test, and levels of potential markers in prostatic secretions and urine. Those markers included nerve growth factor (NGF), tryptase, heparin-binding epidermal growth factor-like growth factor (HB-EGF), and epidermal growth factor (EGF).
Of the 300 patients, 240 (80%) showed the characteristic glomerulations on cystoscopy with hydrodistention, which confirmed a diagnosis of IC. All patients with IC had some degree of erectile dysfunction and burning or pain during and/or after ejaculation. The levels of NGF and tryptase were significantly elevated in the IC patients compared with healthy controls, and the HB-EGF levels were significantly lower in IC patients than in healthy controls. These investigators think that NGF, HB-EGF, and tryptase are promising new markers for evaluating these men and that any young man who has burning and/or pain after ejaculation should be evaluated for IC.
http://www.ichelp.org/research/2003AUAAnnualMeetingAbstracts.html
:::::DING DING DING::::::
Worth checking out anyway.
Hawk,
Might I suggest that Dr Tim's reply (or excerpts from it) be included in the 'just diagnosed' listing? It seems to be an extremely useful outlook on life that more of us should embrace.
Also, Liam seems to have done a great job of medical detective work--I guess he's been paying a LOT of attention to House!
Steve,
In brief, I am somewhat out of commission for the moment. In addition to some other issues, I have been diagnosed with a herniated disc and sciatica. It is accompanied with numbness and some significant leg weakness. I have been on narcotic pain killers for 11 days. Unfortunately, they only knock the edge off of the pain. I have to wait until the end o the month for a neurologist visit. I am starting physical therapy tomorrow. I have considered a chiropractor.
Also, Angus has served diligently as the moderator of the "Newly Diagnosed" area. In fact that area only exists because of his tireless efforts. I prefer to let him handle such requests and manage that area. I actually thought that post would have also been good for the "psychological " topic but I am so distracted it hurts to think about it at the moment.
Regards
Liam,
I was only having erectile problems the week before the doctor's appointment, which followed a weird series of events with a supplement and a diagnostic injection. I was extremely potent before then, as evidenced by my great blood flow results.
But I had an ultrasound a month and a half after the injury and they needed to use four times the injection just to get half the results. Even with the interstitial cystitis, for as long as I can remember I had woken up with rigid erections every morning. I have not done that once since my injury.
See, that's one of the worst things about this. If you have erection problems, doctors can point to a million different things that it could be, but come on: I all of a sudden can't get it up, am losing size and my penis is firm in the flaccid state, and this all happened after the injury. That's not a coincidence.
Ouch! I'm sure that I speak for all in saying that you're in our thoughts and Prayers.
I don't believe it's possible to lose that much size. It may be that they are not viewing the penis when it is erect or something. If you are worried about progression, then I wouldn't definitely cease all sexual relations until it stabilizes.
Quote from: Steve on April 09, 2007, 09:21:08 AM
Hawk,
Might I suggest that Dr Tim's reply (or excerpts from it) be included in the 'just diagnosed' listing?....
This, and some other updates, are done. Updates are in progress in the Newly Diagnosed section. The posts are in chronological order... scroll to the bottom of each topic to check for updates as they will be at the bottom of the post.
You let a doctor stick a needle in your "pee pee". I would say you were having significant problems prior to the injection. You might contend the injection worsened an already present problem. I just don't understand how you can cite it as
the cause.
Also, how can you say it was the Gotu Kola that, all of a sudden, made your penis firm in the flaccid state? I have never read about this side effect in any of the literature. I doubt you would be the only person who would have had this reaction.
QuoteI all of a sudden can't get it up, am losing size and my penis is firm in the flaccid state, and this all happened after the injury. That's not a coincidence.
Erection problem right before the injection, erection problem right after the injection. Do you understand the problem in blaming the injection?
How possible do you think it is the symptoms would have appeared even if you had done nothing? No supplements, no injections.....nothing. Consider that. List the symptoms in the order they appeared: plaque, curve, pain, shrinkage, ED, unusual firmness. It sounds progressive the way you described it. The supplement and shot seem VERY coincidental.
I only say this so you can see from an objective eye.
Good luck!
Liam
Just to reiterate what I said in a private response to Liam, the injection wasn't what caused the problem. It was the severe bend of the erection following it. Explaining the situation again, I once again revert to beating myself up for allowing all of this to happen. I keep replaying that day in my head over and over again.
I should've been more careful. I should've waited out the problem instead of going for another injection. I was mismanaged by my doctors and by myself.
what causes a bend to the left? I always read plaque on the top causes a bend up etc. I was noticing today when my erection was dying my penis starting bending towards the left a litte. When I have a hard erection it doesnt bend any to the left. I do have a half "invisible rubberband effect" on the left side. I know this is what is causing the left bend when my erection is dying. So I was wondering can that cause a left bend eventually even when im erect? Im just confused or will it just cause loss of size in that area? Basically im hoping it will not cause a bend to develop. In some ways I see it would but in other ways I see it wouldnt. So basically im wondering if the invisible rubberband effect can cause one to bend left or right? I just thought the hinge effect didnt produce a curve. Am I wrong on this?
Hello,
I have had a classic tunica tear and indentation with mild curvature but persistent inflammation, collagen production and size loss since 2003. Has anyone experienced significant healing or long-term stabilization by avoiding any sexual activity or use of the penis whatsoever for long periods of time? If so, how did it benefit you or not?
Robert
The hinge effect is a symptom not a cause. The same thing causing the bend is causing the hinge and the invisible rubberband (I, personally, have invisible pipe insulation).
Quotewhat causes a bend to the left?
manual dextrality
manual sinistrality causes a bend to the right. ;)
Hey rcrj,
I definitely think a long period of inactivity could be beneficial if you are still getting decent nocturnal erections. You said you are still getting inflammation after several years, so you must be doing some kind of trauma or else it should have stabilized already. What is the longest period you have refrained from any type of sexual activity since the tunica tear (did you consider this a penile fracture at the time, and where u treated in a hospital)? If anyone else has any insight on long term abstinence and healing experience, I would be interested to know myself.
I got Peyronie's when I was 21 or so. Although I initially started to become more sexually active out of desperation (I was afraid it was going to get worse and I would lose my ability to have sex at all), I later came to believe that by using my penis on a regular basis (but not violently), I allowed it to not contract up too much.
I do think that the contractile component of Peyronies favors a gradual worsening. I now see that use of the VED regularly is serving the same purpose that regular sexual activity did - but without the trauma I might have incurred occasionally.
Gentle intercourse might be a better thing than none at all - but as long as one gets daily erections I think that the progressive nature of the disease might be slowed this way.
This is not "scientific" - this is simply the result of my dealing with this disease for many years. It could well be that I could have chosen to eat five turnips every morning for all these years and would be in exactly the same place - and would be crediting the turnips. So I see that how I am could simply be the way it is, and not the result of anything I "did".
Tim
so are you saying the hinge effect can make a bend to the left also?
Plaque causes the hinge. Plaque causes the curve. Plaque is the demon. Bad plaque >:( The hinge can't cause the curve and the curve can't cause the hinge. The invisible half rubber band is out of the question. If it were a whole rubber band........no.......thats a whole different post.
On the other topic, I agree with Tim that "using it" keeps it from shrinking. My doc says keep it stretched out ;). I agree that the VED is less likely to cause trauma. This is based on personal opinion not scientific evidence.
Tim has been doing a great deal of nail head hitting. :)
thanks Liam but im confused. I have the invisible half rubberband effect. I mean maybe its a hinge or hourglass effect? Its a area that looks like a shoelace is going around my penis halfway. Like the area is missing so to speak, it doesnt fill up like the rest of the erection. So would this be a hinge/rubberband/or hourglass effect?
HCTB:
In my case, the rubber band effect was on both sides of the shaft, just at different times in my history. I had no hinge effect, just the curve to the right and down one time and a curve to the left at other times.
My uro told me that the indentation(s) were caused by the tunica plaque that would not let the blood flow to that spot, etc. Some guys have the hinge effect (causes the shaft to bend easily or sort of flop around) and some do not. IOW, each case of Peyronies Disease is totally different from each other.
My experience has taught me that the VED seems to do the most for my Peyronies Disease symptoms. So, I would suggest that if you have not thought about this route, that you consider getting into it.
Regards, Old Man
thanks alot oldman, I guess like you said every case is different. If I notice any kind of slight curve to the left then im getting into the VED use for sure before it gets worse. I just do not want to risk anything right now because if I stay the way I am right now I would be ok with it. I know I keep saying im gonna use the VED and I will if I see any type of curve pop up. Ive really been looking things up today and see alot of guys get a curve with a dent while others do not, peyronies is so strange and I guess thats why nobody can figure out how to cure it.
Thanks for the welcome and thanks for the suggestions. I'm not even considering surgery now. Right now here is what I am doing:
Neprinol - 3 pills, 3 times per day
L'Arginine - 2 pills 2 times per day
Fish Oil - 1 per day
Vitamin E - 800 mg (two pills) per day
Ginsent - 1 per day
I do feel that circulation is greater than before. I think it is way too soon to expect a significant change yet since I have only done this for one month. This condition took longer than that, so I expect the reversal would take a while too.
I am interested in anything that others are doing that actually worked. I will read more of the forum and see if I see something that may work. I know I read about some French doctor doing a pin prick to the plaque but I cannot find it now. I can't get the magical combination of words for a search. Does anyone else remember that topic and what became of it?
Thanks!
Kenno,
The paper you are looking for is under the area of the forum labeled "Resource Library" . It is not amoung the topics here on the main discussion board.
I had a small tear near the head. Injury was 10 months ago. I went 3 to 4 months between activity. There was virtually no progression and actually a loosening up recently, which made me think it would be rather safe for sexual activity, and it was basically. However, there was some slight shrinkage and progression although I used a very light style of masturbation, and I will probably continue the abstinence for some time. However after the couple of times of masturbation, the pain virtually disappeared just in general. However, it was apparant that there was redness and inflammation and shrinkage after each masturbation, although it wasn't alarming in shrinkage like before where there was slight length loss several months back.
Good info in a humerous format. Well Done. Worth a look!
http://www.vasectomy-information.com/humor/manual.htm
Liam
Greetings from UK..
I have had this condition for about 6 months and am based in UK.. Is there anyone out there also UK based who can recommend good people to see?.. My local NHS doc & locum are really not much help.. As far as I can see most folk signed up to this forum are USA based, but there must be a few UK folk who've found their way here..
All comments & ideas welcome
I created a topic in the Off Topic Discussion Area (another oxymoron) to assists the European Community in finding each other. Hope it helps.
Liam
PS by Hawk: We do have quite a few members from the UK but it is difficult to keep up with locations unless members complete their profile.
Thanks Liam,
Never thought to look there for some reason.. Maybe we could have a topic area called "EU Members?"
Cheers, Penguin
Penguin, we have such a topic. That is what Liam just created for you. I would also recommend doing a word search on EU, Europe, and specific countries. You will find many posts by members stating that is where they are from.
Hawk,
Found it thanks.. and thanks to Liam too of course..
Penguin
as someone who suffers repeated "inflammation-attacks" and often cold scrotum, I'd like to know what you think of applying heat to the penis and scrotum. also, what's the best way to do this? i thought of some kind of heatable-blanket, as logically something soft, that adjusts to the "package", is requiered. what do you think?
meanmrmustard,
Heat wouldn't hurt you, but if you increase the circulation in this area it will help.... pentox does this and so does ginkgo..... also they curtail inflammation... exercise also is good, doing core workouts or working the thighs will bring blow flow into the groin area..... arginine also is something you might want to look at if you aren't using this yet.... hope this helps...
Rico
Heat on the testes is bad on sperm count (if thats a bad thing for you).
Look up heat therapy under "alternative treatments" in this forum. There has been some research in this area. Most of the posts refer to IR as a heat source.
Liam
Heat can be most easily applied in a warm bathtub. It is true that this will lead to reduced sperm counts, which may not recover well if done over a long period of time. If one is "drawing uptight", it may be due to stress and that is mediated via alpha adrenergic nerve pathways. That may be best handled by using Korean Red Ginseng, which works to block such pathways (blocking that may lead to better erections too - though Viagra has eclipsed alpha adrenergic blockers as an erectile dysfunction treatment). Another such treatment used here is Trazodone. Also, relaxation and meditation can improve "hang" by reducing adrenergic tone, as can a program of daily exercise.
Finally, once again Pentox has been mentioned as if it's functionality in treating Peyronie's Disease is due to "increased circulation". That is not how Pentox works, and that effect is not even demonstrated at all, in any way. The effect of Pentox on TGF is proven, and is the putative mechanism for its' effect on Peyronies Disease.
Tim
Pentox was developed to increase circulation.... pentox wasn't invented to cure peyronies.... they where trying to get flood flow to the area, and it was shown to stop inflammation... which in meanmrmustard case would take care of both his problems.... maybe ginkgo would too.... or cilias..... I think all of these would be better than a hot bath.... but if hot baths where the choice then I would go with a Epsom salt bath a couple of times a week.... dmso or the thacker also improves blood flow, or did for me, the cream works well..... pentox makes your blood cells smaller so they can get to the smaller vessels in ones legs and hands ect.... helps with circulation.... yes the tgf is proven and is the mechanism for the curtail of inflammation....
Think of how a old injury feels stiff and cold and works better when warm up or the blood flow is increase to the area..... what you have in a damage tunica is scar tissue..... stiff and cold.... this is where the ved can also help.... exercising it and remolding the tissue also....
Rico
thanks everyone, I'm already taking pentox, have to stop from time to time though cause it F~@ks up my stomach :( also, i'm a lot less worried about my sperms than about my impotence. guess I'll keep working out, also I've been eyeing with a VED for some time now ...
taking pentox and l-arginine, the amount of blood flowing through my testicles has increased. that used to also increase bloodflow in the penis, leading to a fuller hang, but lately, the blood remains in the testicles without transferring to the penis -> full testicles, but still poor bloodflow in the penis. does anyone have an explanation for this?
(i'm suffering severe and worsening ED without diagnosis - docs tested and tested and found no explanation. the only thing they could tell me was that a lot of blood enters, but doesn't stay in my penis. they offered no explanation for that)
(http://health.yahoo.com/media/healthwise/n5551130.jpg)
Source: http://health.yahoo.com/topic/men/symptoms/medicaltest/healthwise/popup/tp10814
Blood Supply
The blood supply of the penis comes from a main blood vessel that goes down the back of the body called the aorta. The aorta then branches to an internal and external iliac artery, and finally a pudendal artery passes underneath the pelvic bone and terminates in the common penile artery. When sitting and especially when riding a bicycle, a man can cut off blood circulation to this common penile artery. When this artery is damaged, arterial insufficiency and subsequent erectile dysfunction occur. A cavernosal artery supplies blood into each of the erectile bodies of the penis.
The blood supply to the glans, or head, of the penis is part of a separate system. It is for this reason that men can achieve an erection without swollen glans, such as in conditions known as priapism. This is also true for men who have penile implants; the glans or head of the penis will not become enlarged.
The underlying mechanism of an erection is the corporo-veno-occlusive mechanism. When the veins cannot become compressed or blocked, an erection cannot be maintained. Without this very sensitive mechanism, blood leaks prematurely from the penis and produces the loss of an erection. This type of erectile dysfunction is called a venous leak.
Source: http://www.webmd.com/content/article/7/1680_50125
I'm sure everyone knows blood does not literally transfer from testicles to the penis. MMM, I knew what you meant. I thought it might be good to post something about bloodflow and anatomy.
A great link with anatomical drawings:
http://www.med.umn.edu/anatomy/6150/CD/Lecture%20Handouts%20HTML/2004%2017%20perineum.htm
thanks liam.
Found this. I had never noticed it. Interesing! Van Buren's disease :::whistling::: ;)
As always this is FYI. It is not an endorsement.PEYRONIE'S DISEASE
A Bibliography, Medical Dictionary,
and
Annotated Research Guide to Internet References
(chronic cavernositis; curvature of the penis; fibrous cavernositis; fibrous plaques of the penis; fibrous sclerosis of the penis; penile fibromatosis; penile fibrosis; penile induration; van Buren's disease)
Pages : 128
Price : $28.95(USD)
ISBN : 0597845158
Published : 2004
Synopsis
In March 2001, the National Institutes of Health issued the following warning: "The number of Web sites offering health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading." Furthermore, because of the rapid increase in Internet-based information, many hours can be wasted searching, selecting, and printing. Since only the smallest fraction of information dealing with Peyronie's disease is indexed in search engines, such as www.google.com or others, a non-systematic approach to Internet research can be not only time consuming, but also incomplete. This book was created for medical professionals, students, and members of the general public who want to conduct medical research using the most advanced tools available and spending the least amount of time doing so.
Related Conditions/Synonyms
chronic cavernositis; curvature of the penis; fibrous cavernositis; fibrous plaques of the penis; fibrous sclerosis of the penis; penile fibromatosis; penile fibrosis; penile induration; van Buren's disease
Description
This is a 3-in-1 reference book. It gives a complete medical dictionary covering hundreds of terms and expressions relating to Peyronie's disease. It also gives extensive lists of bibliographic citations. Finally, it provides information to users on how to update their knowledge using various Internet resources. The book is designed for physicians, medical students preparing for Board examinations, medical researchers, and patients who want to become familiar with research dedicated to Peyronie's disease. If your time is valuable, this book is for you. First, you will not waste time searching the Internet while missing a lot of relevant information. Second, the book also saves you time indexing and defining entries. Finally, you will not waste time and money printing hundreds of web pages.
Table of Contents Forward
Chapter 1. Studies on Peyronie's DiseaseOverview
The Combined Health Information Database
Federally Funded Research on Peyronie's Disease
The National Library of Medicine: PubMed
Chapter 2. Nutrition and Peyronie's DiseaseOverview
Finding Nutrition Studies on Peyronie's Disease
Federal Resources on Nutrition
Additional Web Resources
Chapter 3. Dissertations on Peyronie's DiseaseOverview
Dissertations on Peyronie's Disease
Keeping Current
Chapter 4. Books on Peyronie's DiseaseOverview
Book Summaries: Federal Agencies
Chapters on Peyronie's Disease
Chapter 5. Multimedia on Peyronie's DiseaseOverview
Video Recordings
Chapter 6. Periodicals and News on Peyronie's DiseaseOverview
News Services and Press Releases
Newsletter Articles
Academic Periodicals covering Peyronie's Disease
Chapter 7. Researching MedicationsOverview
U.S. Pharmacopeia
Commercial Databases
Researching Orphan Drugs
Appendix A. Physician ResourcesOverview
NIH Guidelines
NIH Databases
Other Commercial Databases
Appendix B. Patient ResourcesOverview
Patient Guideline Sources
Finding Associations
Appendix C. Finding Medical LibrariesOverview
Preparation
Finding a Local Medical Library
Medical Libraries in the U.S. and Canada
ONLINE GLOSSARIES
Online Dictionary Directories
PEYRONIE'S DISEASE DICTIONARY
INDEX Excerpt (Introduction)
In addition to offering a structured and comprehensive bibliography, this medical reference on Peyronie's disease will quickly direct you to resources and reliable information on the Internet, from the essentials to the most advanced areas of research. Public, academic, government, and peer-reviewed research studies are emphasized. Various abstracts are reproduced to give you some of the latest official information available to date. Abundant guidance is given on how to obtain free-of-charge primary research results via the Internet. E-book and electronic versions of this book are fully interactive with the Internet. For readers unfamiliar with the Internet, detailed instructions are offered on how to access electronic resources. For readers unfamiliar with medical terminology, a comprehensive glossary is provided. For readers without access to Internet resources, a directory of medical libraries, that have or can locate references cited here, is given. We hope these resources will prove useful to the widest possible audience seeking information on Peyronie's disease.
http://www.icongrouponline.com/health/Peyronie's_Disease_Ph.html
Here is what they said about Paget's Disease of the nipple - yup, they got a book on that and everything else. IOW, they have books available on *everything*. I doubt they have books at all - instead they probably scour the web for links when a request comes for a book and they then dash off some cheap piece of crap and call it "the latest update".
Weird.
*********************************
PAGET'S DISEASE OF THE BREAST
A Bibliography, Medical Dictionary,
and
Annotated Research Guide to Internet References
(malignant neoplasm of breast and areola; mammary Paget's disease; Paget's disease of the nipple)
Pages : 60
Price : $28.95(USD)
ISBN : 0497008262
Published : 2004
Synopsis
In March 2001, the National Institutes of Health issued the following warning: "The number of Web sites offering health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading." Furthermore, because of the rapid increase in Internet-based information, many hours can be wasted searching, selecting, and printing. Since only the smallest fraction of information dealing with Paget's disease of the breast is indexed in search engines, such as www.google.com or others, a non-systematic approach to Internet research can be not only time consuming, but also incomplete. This book was created for medical professionals, students, and members of the general public who want to conduct medical research using the most advanced tools available and spending the least amount of time doing so.
Related Conditions/Synonyms
malignant neoplasm of breast and areola; mammary Paget's disease; Paget's disease of the nipple
Description
This is a 3-in-1 reference book. It gives a complete medical dictionary covering hundreds of terms and expressions relating to Paget's disease of the breast. It also gives extensive lists of bibliographic citations. Finally, it provides information to users on how to update their knowledge using various Internet resources. The book is designed for physicians, medical students preparing for Board examinations, medical researchers, and patients who want to become familiar with research dedicated to Paget's disease of the breast. If your time is valuable, this book is for you. First, you will not waste time searching the Internet while missing a lot of relevant information. Second, the book also saves you time indexing and defining entries. Finally, you will not waste time and money printing hundreds of web pages.
Table of Contents
ForwardChapter 1. Studies on Paget's Disease of the BreastOverviewFederally Funded Research on Paget's Disease of the BreastThe National Library of Medicine: PubMedChapter 2. Alternative Medicine and Paget's Disease of the BreastOverviewNational Center for Complementary and Alternative MedicineAdditional Web ResourcesGeneral ReferencesAppendix A. Physician ResourcesOverviewNIH GuidelinesNIH DatabasesOther Commercial DatabasesAppendix B. Patient ResourcesOverviewPatient Guideline SourcesFinding AssociationsAppendix C. Finding Medical LibrariesOverviewPreparationFinding a Local Medical LibraryMedical Libraries in the U.S. and CanadaONLINE GLOSSARIESOnline Dictionary DirectoriesPAGET'S DISEASE OF THE BREAST DICTIONARYINDEX
Excerpt (Introduction)
In addition to offering a structured and comprehensive bibliography, this medical reference on Paget's disease of the breast will quickly direct you to resources and reliable information on the Internet, from the essentials to the most advanced areas of research. Public, academic, government, and peer-reviewed research studies are emphasized. Various abstracts are reproduced to give you some of the latest official information available to date. Abundant guidance is given on how to obtain free-of-charge primary research results via the Internet. E-book and electronic versions of this book are fully interactive with the Internet. For readers unfamiliar with the Internet, detailed instructions are offered on how to access electronic resources. For readers unfamiliar with medical terminology, a comprehensive glossary is provided. For readers without access to Internet resources, a directory of medical libraries, that have or can locate references cited here, is given. We hope these resources will prove useful to the widest possible audience seeking information on Paget's disease of the breast.
********************
MeanMisterMustard,
The information in your last posts have been so far removed from plausible scientific explanation that it drove me back to your prior posts. What I found is very troubling. I will not rehash except to say that almost every post contains information that defies reason and looks much more like psychological obsession than a condition of the penis.
For instance: You state this started by an erection in your pants being bent at an awkward angle at 18 yrs old. Every normal male alive had that as a frequent occurrence all through their teenage years. You then go on to describe ever increasing plaques and discuss your Peyronies Disease at length while telling us 5 doctors found NOTHING. You talk of fuller testicles immediately after taking drugs, fish oil that works within hours and antibiotics that give you night-time erection right after taking the first one. You then post that you do not have Peyronies Disease after repeatedly posting that you do.
Below are quotes from your previous posts.
At this point I would have to suggest that you look into serious psychological counseling to see if that avenue helps you resolve these issues.
i am 23 years old, i had an accident five years ago, where my erected penis was bended. that did it, from that on i had trouble getting and maintaining an erection, and it got worse with time. in time plaque evolved, had a iontoforesis, which improved conditions, but not too much.
___________________________________________________________
i have had stuffable and non curved erections using ED-drugs after the trazodone-incident. so traz is definetly not responsible for the curve, it just brought it to the light. as to the curve that i got, it was immense and felt really weird - i touched one part of my penis and from within my penis it felt as if I'd be touching some other part, that's to say, the sensation didn't correspond to the part that i touched. but i have never had these curve before or after, and it does never ocur halfway on the way to an erection. that would take me back to the blockage of chambers ... (?)
________________________________________________________________
i can not say it 100% sure if its the pentox, but in combination with the cialis i have yesterday had the fullest erection in months. plus, i'm experiencing a weird but good feeling tickling in the bump between my testicles and my anus in the past days. i have to add thatED is not a result of Peyronies Disease, but ED is the result of an accident and trauma, Peyronies Disease came addionally after a few years
____________________________________________________________________
URGENT ADVICE PLEASE
I have noticed that my Peyronies Disease has gotten worse, ......in the past 3 days i felt a strange burning pain inside of my penis., which leads me to the conclusion that there's bad things going on as to the inflammation.
another thing is that i've lately noticed a lot of new plaques - all down over the place where the scrotum is "fixed to" down to the bump between scrotum and anus, all full of irregular strange corroborations. are these plaques or are plaques usually only along the shaft?
__________________________________________________________
Age of onset of Peyronies Disease: 18 (not 100% sure I got Peyronies Disease, docs say they can't feel plague, but I got symptoms like the hourglass and severe ED)
Future Plans: having the lump im my left testicle checked out by a good doctor, the one I saw said it was nothing but it hurts sometimes and it swells when i take cialis.
_____________________________________________________________________
my injury occurred 5 years ago, i was .... 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.
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 so on.
___________________________________________________________________
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.
_____________________________________________________________________
I got an appointment tomorrow for a eco-doppler, but I´m not sure whether i should attend. the thing is, i already had a doppler 1,5 years ago, and nothing came out, everything was normal, so my severe (and still growing) ED-problems couldn't be explained.
__________________________________________________________________
the doctor has therefore only seen the bloodflow in the flaccid state, and as expected, couldn't find any abnormalties.
__________________________________________________________________
taking pentox and l-arginine, the amount of blood flowing through my testicles has increased. that used to also increase bloodflow in the penis, leading to a fuller hang, but lately, the blood remains in the testicles without transferring to the penis -> full testicles, but still poor bloodflow in the penis.
(i'm suffering severe and worsening ED without diagnosis - docs tested and tested and found no explanation. the only thing they could tell me was that a lot of blood enters, but doesn't stay in my penis. they offered no explanation for that)
___________________________________________________________________
I'm more and more convinced that what I'm suffering is a cronic inflammation inside my penis. omega 3 capsules, that I've only just started taking two days ago, seem to help a lot
___________________________________________________________________
I understand your doubts, but as I don't have Peyronies Disease....
Hawk,
Although I share completely your assessment of the obsessive nature of MMM's thinking (and irrationality of some of it), if we accept as "true" that he has an hourglass deformity and ED, than it sort of sounds like Peyronie's Disease to me.
I think that for many young and ill-informed men, ANY change in their penis or testes is reason for panic. Thus, the normal ruggae of the scrotum (the bumpiness) gets more pronounced at times, especially when we are "uptight and outta sight". That normal variation in the penis/scrotum might cause MMM to state: "another thing is that i've lately noticed a lot of new plaques - all down over the place where the scrotum is "fixed to" down to the bump between scrotum and anus, all full of irregular strange corroborations (sic). are these plaques or are plaques usually only along the shaft?"
I don't think I answered that query at the time - for how can you?
The goofy correlations between drugs and immediate changes strongly suggests one of two things. Either he is unable to properly assess what is what in his body (ie mistaking the normal variation in scrotal bumpiness for new plaque formation; or mistaking the normal variations in size of scrotum for "increased blood flow"), or he has a nearly normal penis that looks abnormal on it's way to a full erection, and so he sees it as remarkably changeable in relation to drugs, when in fact, it may be more related to erection quality. And, of course, if erection quality can vary that much, then it suggests a psychological component to the ED.
The good news MeanMrMustard, is that we can learn more about anatomy by reading and listening to our mentors like doctors, AND we can get help for any psychological component of ED and fix it.
I hope that you do so.
Tim
Tim, I do not disagree with a word you said. I do want to emphasis one statement however,
Quote from: Tim468 on May 16, 2007, 08:25:52 AM
if we accept as "true" that he has an hourglass deformity and ED, than it sort of sounds like Peyronie's Disease to me.
Clearly as you said, MMM is either extremely over estimating normal changes in his somewhat diseased genitals or doing the same in his normal genitals. Adding to this, his awkwardly placed erection at 18 as a cause for Peyronies Disease at an exceptionally young age, his "severe curve on one erection and none on any other erection, doctors finding nothing, etc., ....Who could guess.
Clearly his gross exaggeration of changes, along with his associating injuries and improvements with unlikely events, indicate a strong psychological component. This being the case, his ED no doubt has a strong psychological component as well.
I also note that he describes testicle problems, and leaking fluids, and painful urination. that doctors fail to substantiate.
MMM, please understand that I am not saying you are psychotic. We are saying that you need help gaining insight and perspective. Your mis-characterization of symptoms and connecting changes and causes to such inconsequential events, make it difficult for us to even evaluate what is going on much less to give input.
Hi All,
I've been visiting this site for over a year just hiding in the background and reading everything.
The one thing that I have noticed is, no one has ever stated that they have been cured.
All the possible treatments and ointments and whatever,,, and yet nothing.
I hear from my doctor that %50 of patients will be cured.
So is there anyone out there who can give us a good ending story?
Is there 1 in 2 that have had the problem go away?
Thoughts????????????
m-1
hi guys im new to this...when i was about 13 i masturbated really rough not thinking about what i may have been doing, i can remember one time my penis swelled up after, and had like pain thoughout the next few days but was to scared to tell anyone. For the last 6 or so years my penis is rarley ever relaxed when flaccid it was seems retracted and semi hard, and sometimes if im nervous or after sex my penis can form into a hourglass shape which is very uncomfortable and just strange whcih im almost positive is from masturbation when i was younger. Im 23 now and ive never had a problem with normal erections, i just believe my penis has experienced shortening or denting because of this and want to do whatever i can to change it, and also prevent peyronies disease in the future.....any thoughts or questions or anything is much appreciated .......other signs and symptoms- there are like almsot big veins or bands going around the sides where the hourglass forms and are soft to touch and are mainly visible with erection...also have needle head size bumbs on the bottom of my shaft and a few going down it, almost looks like chicken skin .....please help
I hate to disagree with your doctor (especially with his optimistic spontaneous recovery rate). I hope we can improve our curve or reduce our pain. We should continue to use techniques that are scientifically sound. But, it will not go away completely with the current treatments (or without).
My personal opinion (based on my involvement for about 2 years) is there is a 0% spontaneous recovery rate. Those that are said to recover (spontaneously) had a condition mislabeled as Peyronies Disease. Even if we are both wrong, I bet I'm closer by far. Some claim to have straightened their curve through different means. The condition is still there, though.
There are those who may disagree with me. Just call me Thomas (of doubting fame).
Sorry to be a downer. It is important to look at this condition honestly. I have not given up hope. I just don't want to be given false hope.
Liam
Unlike Liam I do believe there is spontaneous recovery as do most Peyronies Disease doctors but I suspect the rate is much closer to 10%. It stands to reason that any known condition can on occasion reverse itself. If the process stops, normal tissue replacement can slowly replace scar tissue. Joshua who has not posted her for several months, experienced a very significant reversal of his Peyronies Disease.
For practical application, Liam's point is well taken. We treat to minimize or stop the progression, and hopefully, actually improve the degree of deformity.
Dear Hawk, dear Tim,
thanks first of all for taking the time replying to my posts. i had realized before that my posts include some contradictions. these are due to changes of knowledge, judgement and priority.
I'll try to clarify the major contradiction right away: today I do not know whether I have Peyronies Disease or not. the first time i saw a curve was after taking trazodone. however, i saw that curve afterwards too. but it's (in contradiction to what I said) minor and appears only at a certain level of bloodflow in my penis, it doesn't appear when I'm erected, neither when I'm flaccid - only in a in-between-state.
I decided for now to not focus too much on that curve, because even if it's Peyronies Disease I'm 90 % sure that it's a reaction to my ED, and not the other way around. after all, during about two years I hardly ever used my 'tool' and had almost no erections at all. I therefore decided to concentrate on my ED and in order to avoid too much confusion in my posts, I neglected having Peyronies Disease, which is neither a lie nor the whole truth.
I mentioned hardly having any erections during two years. I had given myself up, thought I'd just keep on living like that for a few more years, waiting for something to happen, and if nothing will happen, I'll just kill myself. I changed my mind, went back to internet-researching, found this forum and was amazed by the number of remedies that are said to have positive effects on bloodflow, erections etc. it's true that after trying some of them, I thought I'd see quick improvements, I might have over-interpreted some of them, in retrospective they none of the things I tried did too much. apart from Vitamin E, I swear that it increases bloodflow in my penis within days.
as to the incident with the antibiotic, i told it exaclty as it happened - to me it looked like it blocked some bad thing out. as to the 'perfectness' of the erection I got, I was talking about fullness, and the strong need to relieve my self, sth I hadn't felt in years. BUT even then deformities were noticeable, i have lost girth at the base of my penis, making it look like this:
_
( ) (glans)
| |
| |
\ / (base)
now please don't get on me saying that calling it perfect first and not so perfect afterwards is another contradiction, the erection was the best I got in a long time and that's what I tried to focus on in my post.
to me there is no doubt about the physic nature of my ED and other weird things happening in my penis.
i hope I could clarify some thing. i will be less hysteric and more cautious in interpreting things in future. thanks for your understanding.
MMM
Quote from: meanmrmustard on May 18, 2007, 07:11:34 PM
as to the incident with the antibiotic, i told it exaclty as it happened - to me it looked like it blocked some bad thing out.
MMM,
I have no doubt that you posted it exactly as it happened. My point is that the antibiotic you took had absolutely NO physiological impact on your erection IN THE LEAST! It could not have blocked some "bad thing out" This is clear because:
There is no credible evidence that Peyronies Disease is associated with Bacteria.
Even if it was, an oral antibiotic has no impact on bacteria within hours of taking it.
Even if these statement were false, killing the bacteria would not change the structures that have been causing ED
The sequence of events leading to an erection are clearly understood. Antibiotics do not impact any of these events.
So what we have, is that during the course of your day you; ate, brushed your teeth, rode in a car, took an antibiotic, watched a program on TV, talked to people, went to bed and....
You got an exceptional erection.
You somehow singled out the event of taking the antibiotic with your erection. The antibiotic had NO association with your erection unless it had a placebo effect because you believed in the back of your mind it might have some effect. This all indicates that your penis is very capable of an erection with or without antibiotics. All the structures necessary for erection are present and functional. It also indicates that your ED is likely psychologically based. This is actually good news for you.
The only exception I can think of is:
If you have had a back injury that may be impacting a nerve trunk
AND if your erection vanished within 2 minutes of you waking up.
For what it is worth, Puritan Pride http://www.puritan.com/ is having the best pricing it ever has on supplements. Problem is, this (Sunday) is the last day of the 3 day sale. I have never seen a competitor beat these prices and they alway test out among the best in consistent potency and being free of impurities.
That site also has a very good nutritional guide and drug interaction section. http://www.puritan.com/vf/healthnotes/HN_live/index.htm?Hcontent=All_Index
Excuse my ignorance, but is there a gallery featuring images of peoples curvatures? I've seen the occasional pic linked to externally, but would it not it be useful to post progress pics, or before/after style pics? If no-one is interested, I would at least urge people to document progress for themselves so that is easier to tell if actual progress is occuring or not. I have taken a few pics and am hoping/praying that in a years time I will have updated images that show a marked improvement in my condition.
Not many men feel comfortable with this. There are some who have photographed the curve for a doc.
Here are some links I posted recently.
https://www.peyroniesforum.net/index.php/topic,70.msg9477.html#msg9477
Try using the search tab above between help and admin. It is pretty powerful and will hook you up with some other links.
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Its like body modification without paying for it
AND..............................
Its always about the drugs.
AND..............................
Terror is such a bloody terrible word. Ivan was terrible.
Calamity has a nice ring. Calamity Jane was a folk hero.
QuoteAge - 18
Age at onset of Peyronies Disease - Also 18, its not been a great year so far
Very First Symptoms -pain in erections and then the lumps and the interesting new direction my penis decided to take in life
My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes - things getting worse, Uro was useless, only Vit E at the moment, no effect whatsoever, so.... my psychologist, fearing for my mental state wants to take me back to another uro, try other treatments. Have been a nutcase for several years anyway, severely exascerbated by recent onset of 'oh F^@% my johnsons stopped working' disease. So now, highly mentally unstable with a broken penis, still get erections though, although, what with the pain thats not really very helpful.
Where I am today, future plans - Today, im actually in my house, doing nothing, very limited future plans outside of drink myself to madness. Just generally go round causing terror. oh I should be somewhat better with my anti-depressants though
WELCOME ARNDAY (if I were Barney I'd say welcome Arnj)
GUYS 23 hourglass sometimes when flaccid, worried of a bend forming what drugs should i take, or creams, or vitamens .......should i see a uro first? dont really have the $
See a Urologist. Self diagnosis is dangerous.
Good Luck!
hey guys found a specialist in chicago where i live, one of the best i guess for peryonies he even does surgeys...anyway i dont have insurance and before your 1st consultation u need to get a penile duplex ultrasound... im just wondering how much you guys think this app will cost me
Go straight to the source.
He'll give you an answer you'll endorse.
People yakity-yak a streak and waste your time of day.
You young whipper snappers have a way of typing thats a strain on my eyeses. I think spelling doesn't matter and punctuation is an option. Please remember your audience is over 40 (many much over), with family and jobs. The time we devote to this is precious. Use a period every now and then and throw in some caps. Please help us help you.
Wanksta,
I have a question for you. You said
Quote"He is one of the best I guess. He even does surgery."
Lots of butchers do surgery and have permanently ruined lots of people, so that is no basis for assuming someone is "one of the best". This doctor may indeed be the best in the world but I am interested in how you know that. Also, there is no way we could guess their specific charge without insurance. I think a phone call to them would give you a very accurate answer.
After reading your first post, I have the opinion you should go to a family doctor, or a free clinic. Let them tell you if you have something that needs a urologist before you spend too much money. Your symptoms do not make me think of Peyronies Disease.
Sorry for the bad typing guys. I just called the Uro's office and asked about his qualifications, and hes been working with Peryonies since 1991 and is considered 1 of maybe 3 actual Peryonies specialist in the Country, and was named best doctor in the country a few times. His name is Dr.Levine in Chicago.It was 500$ for the ultrasound before the consultation, and like 75 for the consultation. So im not going to get the ultrasound
Wanksta,
I was hoping that Dr. Levine was the doctor you were in reference to. He is in fact one of the most informed on the subject of Peyronies Disease in the country.
Quote from: wanksta1 on May 28, 2007, 01:24:10 PM
GUYS 23 hourglass sometimes when flaccid, worried of a bend forming what drugs should i take, or creams, or vitamens .......should i see a uro first? dont really have the $
See a family doc. I am sure it will be less than Dr. Levine. You need to let someone who has at least some knowlege determine if you have Peyronies Disease. What can it hurt? An hourglass appearance sometimes is not necessarily indication of Peyronies Disease.
Write down all (I mean all) of your symptoms (or any change). Discuss this with the doctor. If you are a student, the university often has a clinic which is free for students. You are making the jump from vaguely similar symptoms to going to see the leading urologist in the field too quickly. I can only tell you what I'd do in your situation.
Good Luck!
Thanks for the typing!!! :)
well thanks for responding guys its really great to be able to talk about this. Liam i saw a doctor and he looked at me and did a physical exam using his fingers for about 2 min, and said he thinks im healthy and it was a normal exam, and said the hourglass shape which ive had for around 4 or 5 years now might be small tears or scars but doesnt think its peryonies. After the exam i just didnt feel satisfied because everyone on here says that doctors dont know anything about this condition and you have to see a Uro to be sure.
It is true that many Urologist are not as well read as they could be about Peyronies Disease. Just be aware you are reading a forum full of men who have varying degrees of curve and plaque. Many have pain and many more have ED. We openly complain about how little is known about this disease. There is one thing I will say. Its a case of "when you got it, you know it". And based on what you said here and what your doctor said, you are lucky enough not to have it. The odds are you never will. I hope this puts your mind at rest.
Most (very, very, very, high percentage) men with Peyronies Disease have a curve and (and/or) plaque (I believe 100% have fibosis or plaque but thats a different discussion). You have neither.
PARTY TIME!!!!!!!
Just as a note to members and guest, it is OK to trust your doctor. Never think this forum, as a group, has anything less than high respect for our medical professionals. Having said that, its always a good idea to understand what is happening to your own body. This is done through real research and study. This forum is great. It should lead you to do research and study. We also reprint studies done, from time to time. However, never take anything you read on this forum, or anywhere, as having more validity than what your doctor says. You have to weigh statements based on facts. This includes things I say. Your doctor can see you and do tests and ask questions. We can't.
Wanksta,
I am glad Liam stated so well what needs to be occasionally stated. Most of us are older and have been through many conditions with both ourselves and love ones. Most of us take an active role with our own health care. Focusing on a personal medical condition for weeks as an informed patient means we often find things a physician missed during his 20 minutes of analysis. In almost every case however, we miss several things they consider, and they respond to the things we point out. That is why it is a team effort.
If you considered and present a case for a Peyronies Disease diagnoses and he considered it, in the absence of obvious manifestations of the disease, I think you can relax.
There is not enough time or space here to list the outstanding performance we have often seen from the medical community so we often focus on the areas that need some improvement.
Well i agree with you guys, i tend to not trust doctors or believe them and find myself searching the internet to find more things wrong with me. Im going to trust my doctor until i see otherwise. Thanks for thoughts its really comforting to know theres people in the world who are willing to listen and help without even knowing the person. Wish you all the best
Glad we were able to offer support.
QuoteIm going to trust my doctor until i see otherwise.
Good advice!
Liam
Just my two cents...
I'd think about finding a way to pay for an ultrasound (or I would ask if he would be willing to see you without it) and then I would pay the 75 for a visit (that sounds too cheap to me - was it 750?)(which sounds too high...).
I think that if you have early disease that you might benefit from an informed opinion, since you might be better able to actually heal from an early problem compared to a later in it's course problem.
Finally, ANY problem that changes the resting or erect shape of the penis requires investigation.
Tim
I agree we should actively pursue a diagnosis that is conclusive. If a condition is perceived with uncertainty and has not changed in 6 years, then a physical examination by a medical doctor reveals no abnormalities, how conclusive do you need to be?
Peace of mind is priceless, agreed. But...... :-\
Better safe than sorry springs to mind. Oops, gotta go get screened for bubonic plague ;)
Liam
Liam, I disagree with you on this one.
We have heard again and again about brush-offs from doctors who are intellectually too lazy to really take a history, or to do more than a cursory examination, or who give bad or out-of-date advice. Again and again we hear about this.
If a man has a condition and it has not been diagnosed, then he needs to seek help until he gets a diagnosis, IMHO.
I see patients with lung disease. I cannot count the number of times that patients have presented to their doctor with a cough, been treated for asthma, and then not gotten better. And then the most amazing thing happens. Their doctor gives up. He or she says something like: "Well, it isn't getting better - you have to live with it", or "Keep on using the albuterol - it should help", or "How bad is that cough, really?"
IOW, the doctors check out of the intellectual process of problem solving because it gets hard.
It's frigging unbelievable...
The only thing I do differently is switch gears a bit and say "If that drug did not work, why not?" - and then go on to test my hypothesis (ie wrong drug, too low a dose, wrong diagnosis, etc).
In Peyronies Disease, what I see is a tendency for a doc to palpate briefly, and if it "feels normal" to state that it is normal - simply because he can't feel the problem!!! If the problem falls even slightly outside the realm of "usual", they check out in their thinking and seem to default to "nervous patient who needs reassurance" instead of "Hmmm - if I can't feel it, then what is it?".
I am making a few assumptions here for I truly do not know what goes on inside the brain of a doc who simply stops thinking. But I have seen evidence of this so many times as to be certain that this limitation in thinking/behavior exists.
I am not sure I have all the details of "wanksta's" [koff koff] condition straight, but I think that if his penis looks different than it "should" look (or more precisely, used to look), then he ought to go to a doc to find out what it is. If a doc is going to call it normal, then he has to come up with an explanation for why it looks different or he is not doing his job.
Tim
Well said Tim,
I think I agree. It all comes down to the skill of the physician and the level of involvement in the patient. I have a GP who is very thorough. He found my prostate cancer when another doctor had said, "Its a little large nothing to worry about." I am more trusting with him.
Another doctor diagnosed my frozen shoulder as "your getting older...we'll try a little physical therapy"
I was lucky with the prostate cancer. With the frozen shoulder, I took the lead because the level of discomfort was too great and I had done my homework. I found a new doctor who listened.
When I was diagnosed with Peyronies Disease, I had zero doubt something was wrong. If a doc tried to dismiss me, I would have gone to another doctor.
On this particular case, I suggested trusting the doctor because our friend 1) was not clear about symptoms which were at best atypical 2) had experienced no change, no new symptoms, etc. in several years since a painful experience masturbating at age thirteen 3) had a physical exam (2.5 min palpating a penis seems too thorough to me ;) ). There has to be a point when a person says I'm satisfied. Its time to move on.
I do hope that everyone (including myself) pays attention to this exchange. Do not let a doctor (or anyone, for that matter) convince you of something you know can't be right. However, consider how sure you are that something is really wrong. Many a medical student has developed symptoms to some strange diseases just by reading about them. And, these are some otherwise "smart cookies". I guess trusting a diagnosis is like jury instructions, "Beyond a Reasonable Doubt".
BTW, I know Tim has been on this board a long time and he knows my posts. I worry that someone new might think I was being a jerk. I tease all the time. Sometimes I seem like a smarta** and I guess I am. But, I think Tim is a GREAT guy. I would choose him as my doctor if he were in my home town and would be honored to have him as a friend. Imagine, a doctor who believes his patients and is diligent in diagnosing and treating. What a concept!
I also feel, after we have exchanged posts, I walk away with new insights. Thats what this forum is about. Thanks Tim!!!
hey guys its me again, the reason for my worrying is because ive been having alot more sex recently and dont want anything to change that. I went on the internet and looked up peryonies again, this is the second time in 3 years ive looked this up in the web. 3 years ago the uro i went to didnt find anything but told me to use MSM cream, which i never bought.
Here are my symptoms
--hourglass shape sometimes usally when im nervous or cold or after(kinda weird) diarreha
no change for about 5 years or so
when erect i can see a bump on the side of my shaft soft like a vein but bigger going about a quarter of the way around my shaft
--little tiny bumps on the shaft most are hair folicls but some go higher like a string of them up the shaft, some are hard
--recently i have noticed when i wake up in the middle of the night to go to the bathroom my penis bends alittle like a bananna, seen this 3 times now twice to the left once to the right. I can shake it right out when peeing to being straight.
Still no problem with straight erections. Also my penis has never been relaxed when flaccid ever since i was around 7, always been really uncomfortable
What did the urologist say MSM creme was for?
im sorry it wasnt msm, it was like veri something cant remember sorry
verapamil?
"had a physical exam (2.5 min palpating a penis seems too thorough to me ;) There has to be a point when a person says I'm satisfied."
Usually, with a little work, I can be satisfied in 2.5 minutes, but I like that it takes longer than that usually!
Wanksta - I do not have a clue what it is that is going on with your penis. However, I had some thoughts.
If I had to guess, I would think that you have fairly high adrenalin levels (increased stress) and that you penis likes to retract for that reason (like it does when it is cold). A way to see alternatives is A) how is it in the warmth of summer, B) how is it after a relaxing bath or after masturbation or sex. If it "hangs loose" at times, then probably it is simply a matter of increased adrenergic tone - you might think about relaxation techniques.
If it never loosens up and is always uptight and outa sight, then it may simply be that your tunica prefers to contract down when not engaged in expanding with an erection.
The curve to the right OR left suggests a slight difference in relaxation and engorgement rates of left to right when you are getting an erection.
In no event does it seem that you have a problem when fully erect, so you do not seem to have Peyronies.
Just my two cents worth.
Tim
I found this article from the Journal of Urology
again. It is from 2005. The information is still good.
http://www.urotoday.com/prod/pdf/reviews/BJU1_apr2005.pdf
Excerpt:
QuoteOf concern is the belief by some that even the
most recent data underestimate the true
prevalence of Peyronies Disease. Men might be reluctant
to report a condition that they consider
embarrassing, and older men might often
accept their symptoms as insignificant
consequences of ageing. Many physicians
agree that the true prevalence of Peyronies Disease has
become more apparent since the advent of
oral sildenafil, which has seen a marked
improvement in community awareness of
erectile dysfunction [1].
Unfortunately, the quality of epidemiological
data on Peyronies Disease remains erratic, with one
contributing factor being the various criteria
used by researchers to define the condition.
The most accepted objective measures include
the number, size and location of plaques,
as well as induration and curvature.
Nevertheless, epidemiological data have been
used to propose risk factors associated with
Peyronies Disease. Hypertension, smoking, diabetes and
hyperlipidaemia have all been suggested as
risk factors, but these are more likely to be
related to erectile dysfunction in general, and
current research has shown no substantial
relationship between these factors and the
severity of penile curvature [3].
Read the whole thing :)
Here is a new publication - the upshot is that younger men present sooner in their diseae process than older guys. I believe this is due to more frequent sexual activity, and less ability to roll with the punches (or to wait and hope it will get better on it's own, as older men are want to do). Also, younger men may have more comorbidities like diabetes. I think this is a real association and not due to, as the previous reference suggests, " more likely to be related to erectile dysfunction in general, and current research has shown no substantial relationship between these factors and the severity of penile curvature..."
Although the severity is not due to commorbidities like diabetes, the presence of Peyronies Disease is definitely more related to such things (ie diabetes). Therefore, I strongly suggest a thorough health evaluation for atherosclerosis and diabetes is you develop Peyronies Disease at any age, but particularly if you are under 40. (Yup - that was their cutoff for young).
Tim
U Deveci S. Hopps CV. O'Brien K. Parker M. Guhring P. Mulhall
JP.
IN Department of Urology, Weill Medical College of Cornell
University, New York Presbyterian Hospital, New York, NY, USA.
TI Defining the clinical characteristics of Peyronie's disease in
young men.
SO Journal of Sexual Medicine. 4(2):485-90, 2007 Mar.
AB INTRODUCTION: Peyronie's disease (Peyronies Disease) is usually seen in men in
their fifth decade of life. AIM: In this study, we investigated the
characteristics of the disease in young men. MAIN OUTCOME MEASURES:
The demographics, clinical features, and associated comorbidities of
the patients with Peyronies Disease were retrospectively reviewed. METHODS: The
findings were compared between men with the disease who were under
40 years of age with those over 40 years. Statistical analyses were
conducted to define differentiating features between these two
groups. RESULTS: Of the 296 patients, 32 were under the age of 40
years and 264 over 40 years. The mean duration of the disease was 2
+/- 4 and 6 +/- 8 months in the respective age groups. Fifty-six
percent of the patients under the age of 40 years and 75% of the
patients over this age presented with curvature (P < 0.01).
Thirty-seven percent under 40 years and 12% men over 40 years had
more than one plaque at presentation (P < 0.01). Dupuytren's
contracture was seen only in patients over 40 years of age. Pain at
presentation was found in 75% under the age of 40 years and in 65%
over 40 years (P = 0.03). Trauma history was found in 18% under 40
years and in 5% over this age (P < 0.01). Statistical significant
differences were found between the groups under and over the age of
40 years for hypertension (P < 0.01) and dyslipidemia (P < 0.01).
Diabetes was noted in 50% of the patients under the age of 40 years
and in 18% of the patients over this age (P < 0.001). Multivariate
analysis of conditions associated in men with Peyronies Disease under 40 years of
age showed statistical significant differences for diabetes (P =
0.015), presentation within 6 months (P = 0.004), and having
multiple plaques (P = 0.008). CONCLUSIONS: Young men with Peyronies Disease are
more likely to present at an earlier stage of the disease, to have
diabetes, and to have more than one plaque at the time of
presentation.
PT Journal Article.
Quote from: Tim468 on June 01, 2007, 04:39:17 PMThe curve to the right OR left suggests a slight difference in relaxation and engorgement rates of left to right when you are getting an erection.
good to hear an alternative to the common curve=Peyronies Disease diction. i also experience slight curvatuare during a stage in the process of getting an erection w/o having palpable plaque and w/o having a curve when erect
They are always there during erection with Peyronies Disease. They are there when flaccid. They're just not as noticeable. :(
If it comes and goes, its not Peyronies Disease :).
ya my penis looks most normal when either becoming erect or erect, it only really gets the hourglass shape (which can be severe) is when i have really bad anxiety or sometimes after sex, and all it takes to make it go away is either to urinate or massage the bloodflow.....i know this all sounds strange guys.
The really bad thing is its been controling my thoughts and feelings for the last 3 weeks, i have a terror feeling whenever i look down there and see that, and its bring whatever anxiety i use to have in the past, (which was really bad) some back worse right now.....lifes great sometimes :-\
Wanksta, My observation has been that hourglass shape is very common in semi-errect penises and is nothing to be concerned about. I have experienced it for years before I ever had Peyronies and I am sure it had nothing to do with getting Peyronies. I really wouldn't worry about it at all. Its completely normal. I would be far more concerned about getting my anxiety under control. Part of that is getting information, which is what is happening here. But part of it also might be to discuss it with a medical professional. Also, a good diet and LOTS of aerobic exercise can do wonders in terms of anxiety. Taking aloe vera softgels got rid of my anxiety problem. But each case is different. I really doubt that you have Peyronies. What you are describing just doesn't sound like Peyronies at all to me. Also, if you are having indiscriminate sex with multiple partners, you are putting yourself at risk for things far more serious than Peyronies, you have reason for anxiety and you should be dealing with your irresponsible behavior.
...how did you guys know you had peryonies?is it something that you cant really miss? is it a hard lump soft lump? can you have peryonies without a curve?
the hourglass-shape is an indication of reduced blood-flow in the penis, isn't it? even if that has no consequences on 99,9 % of penises, isn't it possible that it favors Peyronies Disease or other developements that lead to a unhealthy penis?
as for me, I experienced the hourglass about the same time my ED problems came on
Response to MMM - The ONLY time the 'hourglass' is a concern is when it occurs when you are fully erect. As for the 'lack of blood flow issue', I think this horse has been beaten for a long time on this forum, but I personally doubt that it has much to do with the onset of Peyronies. In the first place, the kind of blood flow issues that would be involved with Peyronies would not be visible to the casual observer and certainly would not take the form of the hourglass phenomenon. ANYONE with a near normal erection who is worried about this issue is really wasting their time worrying. Sure, you can have this manifestation and later develop Peyronies. But that does't indicate that it caused or was even part of the cause of the Peyronies. I am sure that a lot of people experience this and NEVER EVER develop Peyronies.
To Everyone (if the shoe fits, so to speak) - So IF YOU HAVE A NEAR NORMAL ERECTION you all can worry about these things if you like, but you are just wasting your time and trying to invent a disease to justify your presence here. Sorry to sound so harsh, and if someone else here is able to help you, that would be great, but I think you are looking for help in the wrong place. So, go see a urologist. And if you don't like what he says, get a second opinion. But if the two agree, do yourself a favor and put Peyronies out of your mind and either rejoice that all is well or see another type of specialist who is better equipped to help you with your problem. IF YOU HAVE PEYRONIES, YOU WILL EXPERIENCE NOTICEABLE DEFORMITY IN YOUR ERECTIONS AND YOU WILL BE ABLE TO FIND HELP FOR THAT RIGHT HERE.
(modified 06-17-07 by George in attempt to add clarity)
Any significant level of Peyronies is difficult to miss. It typically manifests itself as a pronounced deformity of the erect penis. That deformity may change gradually over time, but if your penis bends in one direction one night and in the other two weeks later, you probably don't have Peyronies. Slight bends in the erect penis are fairly common and usually normal. Unless I have a fairly significant bend, hourglass, or loss of length and/or girth when COMPLETELY ERECT, I would not be too concerned. As one who has been diagnosed with Peyronies by a trained and licensed urologist, those are my observations.
When you get it there is no doubt! My first "noticed" symptom were two small "nodules". I now have an up and to the left curve and plaque on the majority (>60 % of dorsal side) of my penis. The "hourglass" that counts is when its erect. The only thing I would add to George's list of symptoms is the plaque (nodules) although some on the forum don't seem to be able to find them. Most with Peyronies Disease are very (often painfully) aware of the plaque.
Also, the order of appearance is plaque, curve and/or hourglass, then ED. Sometimes I think the curve is noticed before the plaque. The ED never comes first, at least related to Peyronies Disease. I mean someone could have ED and then develop Peyronies Disease. But, ED doesn't show up as the first symptom of Peyronies Disease.
Guys, at the risk of being blunt, a flaccid penis will change shape continuously for no apparant reason. Thats just the way they are made. So called "hourglass while flaccid" is perfectly normal.
Quote from: George999 on June 06, 2007, 03:52:49 PMI think you are looking for help in the wrong place. So, go see a urologist. And if you don't like what he says, get a second opinion. But if the two agree, do yourself a favor and put Peyronies out of your mind and either rejoice that all is well or see another type of specialist who is better equipped to help you with your problem.
I already have put Peyronies Disease out of my mind, however that doesn't change the fact that I can learn a thing or two here
MMM:
At least, you will have some idea of what to look for and what not to look for, huh? You are right, the informed person is armed with knowledge to combat most any situation.
Old Man
Why would anyone want to spend time on this forum that doesn't have Peyronie's or have a loved one with Peyronie's? ???
came for Peyronies Disease info, stayed for ed info (supplements and stuff)
Hello Mustard, Actually, I was responding to Wanksta. I really see your situation differently. If you really are having increased bending when fully erect, that certainly sounds like Peyronies to me. I think it is important to note that it is possible to have Peyronies without having palpable plaques and I think a lot of urologists are simply not aware of that. Usually, if they can't feel plaques, they conclude it is not Peyronies. But the tunica can become abnormally thickened creating distortion without creating palpable plaques. So, in your case, I would not conclude that what you are experiencing is not Peyronies. -George
Guys, we all have done it but lets not neglect clear Subject lines.
If we are posting in reply to Zorro who cut his penis off and wants advice on reattaching it, our subject line on our post should look like this -
SUBJECT: Re: Zorro - Reattaching Penis
In the above instance it shows who our post is directed to, and the topic. If your post is not directed to anyone in particular, then just include the topic since that is all that is needed.
Thanks! I will butt out now.
I'm new to this forum as of today, but not new to Peyronie's. I came up with the symptoms in late 2004 and it progressed from there. Small plaque on the top with inflammation and pain, then bending to the left and now reduced penile size with some hourglass effect. I can still get and maintain an erection at the moment though but who knows what to expect in the future. I'm 57 now, so I guess I've taken it better than maybe someone who is younger. When i came down with the disease, I visited a urologist who diagnosed it and prescribed vitamin E 400 IU. I researched on the internet and began taking 2 grams daily of acytl-l carnitine. I've always taken fish oil tabs and other antioxidants. I subsequently have seen two other urologists. The first increased my E intake to 800 IU. The second told me that what I have is what I will end up with. My research shows that he may be wrong, it could go to ET. I hope not, but all I can do is take whatever measures I can to try to prevent that. Here is the kicker. I also have dupuytren's disease in my hand and plantar fibromatosis in my feet. I've always been a long-distance runner and was about 3 weeks away from completing training for a half marathon when I developed pain in my left instep. Walla.....found the bump which I had never noticed previously and the podiatrist diagnosed it as plantar's. By what I read, they are all related. I never give up on these things and I'm glad I found this forum. Being up-to-date on anything is really important and it seems you guys are. Other things I have taken....Nattokinase, Serrapeptase and Fibrozym. Didn't really see much of a difference with those....but who knows.....maybe they have helped prevent it getting worse. My urologists all told me to have sex and keep it stretched...as someone else said on one of the posts here. Who knows? Maybe it does help. But I would think that holding down the inflammations would be a good step...one which I have tried to work on. My best wishes to all of you. I know the mental side of this and it is like any other loss....we have to go through all the stages or mourning. As I said, I am going to be happy to be a participant here.
Hi Califman
Interesting you should mention your foot. I have recently developed a lump on my Achillies tendon which I believe is fibrous tissue. Maybe this is connected with my Peyronies Disease too.
Regards,
Percival
Thanks Hawk for that reminder. I have gone back and modified a subject line of one post and the text of another to try to make them more clear.
There are links between the various forms of fibrosis. There are also links between Peyronies / Plantar problems AND beta blocker drugs commonly prescribed for hypertension and heart problems. Beta blockers alter certain inflammatory responses by artificially redirecting blood flow along with other effects and are suspected of instigating certain fibrotic conditions as a result. But this is so low on the pharmacological radar screen that it is not listed as a potential side effect.
George: Actually, one of the side effects of beta blockers (toprol) listed in the PDR (physician's desk reference) under miscellaneous side effects is peyronie's. Even my heart specialist didn't know this. Alan
allj, REALLY? This has to be pretty new. The last I knew Peyronies wasn't on the list and neither was Plantar Fasciitis. Its about time. Researchers have suspected it for a long time and I can tell you that it was AFTER I quit the beta blocker that my longstanding Plantar Fasciitis miraculously disappeared, but of course Peyronies is not so easy to reverse.
6/20/2007
hello. this is my first post. i really need some help. i'm severely depressed. Please hear my story. first of all, i'm 26 years old, was sexually active, never had any sexual problems, and had a relatively straight penis with no erection problems. About 4-5 months ago, i injured my penis while having sex with my fiance. just about one month ago, it started curving. the curvature has worsened and the pain has intensified. it now hangs, when flacid, about 45 degrees to my left. when erect about 25 degrees to the left and its slightedly twisted upwards (never like this before). i've seen 3 urologists already. each offering different opinions and advice. the first told me that it was fractured and said thats its too late to perform surgery (since i supposedly fractured it a few days before meeting him) and to wait and see. i seen him again a month later. he told me i have Peyronie's and he could feel a scar. he suggested an MRI. the second urologist said that he couldn't feel anything. he also said that penile trauma was not possible cause of Peyronies. the third uroloigst i've seen, a well-respected and known urologist in the medical field on Peyronie's i found on the net, Dr. Laurence Levine from Rush Medical Center Chicago, told me that he didn't feel a scar neither. he prescribed L-arginine, pentoxifylline, and celebrex. he suggested that "extender" or stretcher others have mentioned on this post, also injections of verapamil, but suggested to wait.
In essence, i'm very confused and distressed as to how to proceed. my curvature is worsening about every week. my pain will not go away. something is obviously not right. my erections hurt. i'm in pain from the tip of my penis to the base all day long. the pain along with the curvature is killing my job (i'm probably going to be fired soon and lose health coverage), sexual relations with my fiance, and much more (lost $ in the stock market--was a part-time daytrader--the pain affected my trade decisions and thoughts). my outlook on life is dark. this is no exaggeration. the pain and distress has become so bad that i've considered the worst lately...and with someone like me, who has the balls to make regular day trades of $80,000 a trade like its a walk in the park, having the courage to harm myself will not be easy, but i've got enough in me to do it. i've have been planning to give up on all of this soon. PLEASE RESPOND. OFFER SOME FORM OF ADVICE, CONSOLEMENT. i never knew something like this could bring a man down so low. i've done lots of research on penile fratures, peyronie's disease, penile trauma, modes of treament, etc. i've read through most of these posts and posts from other forums---with all due respect, spare me simple general info. thank you so much. my email is: whatsthemeaning@aim.com. PLEASE HELP ME.
Brother, you are in the right place. We have all been there. I cannot tell you what will happen medically. The pain will improve,though, regardless of the cause and the mental anguish will get better. Please don't hesitate to seek professional help. Any man here will tell you there is no shame getting help from a mental helth professional. There are good medications that will help bring your life into focus. Many of us here use these. They will help. Right now your mental health should be your priority. It is an illness, too. It requires treatment now.
Dr. Levine has a outstanding reputation and I would not hesitate to follow his advice.
Please call and get an appointment with a psychiatrist now. That will help you more than anything.
Good Luck!
Liam
Liam,
Thank-you for your thoughtful and caring advice.
Welcome asmith! So sorry to hear that you are going through this traumatic experience. So far you have gotten some off the wall advice from several doctors and that adds even more confusion to the mix. But I want to tell you that Dr. Levine not only has a great reputation around here, but the advice he gave you sounds right on the mark. I would urge you to start following that advice IMMEDIATELY if you haven't already done so. Secondly, I would not worry about the heavy pain (I've been there, its quite normal and will pass), OR the abnormalities in your erections (they are to be expected and may get better even to the point of completely going away, ESPECIALLY if you take the medicine Dr. Levine prescribed for you.) At only 4 - 5 months, you are getting an early start on this AND you are still young which I think would indicate that you have an excellent chance of regaining your penile health. Pentoxifylline is absolutely the best drug out there for Peyronies. If I were in your position, I would also make an effort to get on an anti-inflammatory diet which means things like olive oil, fish oil, flax seed oil, fish, etc. and severely limiting things like corn oil, red meat, etc. You: On A Diet by Oz and Roizen is a great guide to restorative diet and exercise. But at 26, I certainly wouldn't throw away my life over something like this. You just have to great a future ahead of you. Don't be afraid to ask for help. Dr. Levine is on your side and is giving you great advice. All of us here are wishing you the best. And there are professional counselors and spiritual advisers out there who can be a great help in these times as well. But you have to seek them out. On the way, don't let yourself be 'bummed out' by the stupid things that some insensitive people might say. Just put them out of your life and keep looking because the support is out there, but you have to take the initiative and seek it out. Also, be aware that your mind and body are connected and your 'dark thoughts' can be interfering with the healing process. So it is important to build your support network and also to make sure you get plenty of exercise, both of which will help to relieve the dark thoughts. In times of crisis it is easy to see everything in the future as being dark, but with a little patience, the sun can come out quite unexpectedly. - Sincerely, George
George,
Thank-you. very caring and insightful comments. i appreciate everything you said. thank-you. God bless you and Liam.
how do you and Liam know of Dr. Levine. have you been treated by him?
asmith,
When I first started searching for information on Peyronie's a few months back Dr. Levine's name kept coming up. I was impressed and scheduled a telephone consultation. He recommended the same treatment plan that he recommended for you with exception of the Celebrex. He also helped me find a urologist in Atlanta that had a clue about Peyronie's Disease. It sux that you have P.D. but you have access to an excellent doctor that knows much more about Peyronie's Disease than the average urologist.
C
I can only speak for myself, but when you are on this forum for a while rapping with guys from all over the US and all over the world, you begin to discover who the good docs are. Even the good docs don't always agree with each other as to what the best treatment approaches are, but their treatment philosophies make sense. The advice you got from the first two docs just didn't make a whole lot of sense to me. In the case of Dr. Levine, his advice to you makes perfect sense and the advice he's given others who have posted to this board has made sense. Every thing I have ever heard about him indicates that he really knows his stuff when it comes to Peyronies. And he is one of a small handful of docs that I could say that about. You are in good hands with him. You can trust him to do his best to help you through this and he is a VERY talented and capable physician. - George
George, Chad, and Liam---Thank-you.
I have seen his research, articles, and studies. Try Googling Levine and Peyronie's and see what happens. WOW!
ASmith,
Welcome to the forum. You have received good immediate input so I will only add my best wishes and touch a couple issues. As George mentioned, your mind and body work together so please attend to your frame of mind. You know best if that means a GOOD psychologist, a spiritual counselor, or some meditation, music, and uplifting activities. If thoughts of hurting yourself continue, professional help is a must.
Take comfort in the fact that you can take Levine's advice to the bank. If you start his protocol immediately you will be fighting back. At your age and considering the cause of your onset, you have good odds. Even with worst case scenario, the pain will disappear, and your power to deal with the psychological aspects will improve.
When you work on the Peyronies Disease issue (pentox, traction, etc) focus on that. When you are at work, put Peyronies Disease out of your mind pour yourself into your work. You can master this. With the effort I know you are capable of putting out, you can turn the Peyronies Disease, the psychological issues, and the work in a positive direction.
Take care my friend.
Welcome Sombre Soul (see "Our Histories").
Quote from: SombreSoul on June 21, 2007, 06:27:27 AM
Have you been to a urologist? It sounds like you have a congenital curve. I don't think I'm going out on a limb on this. Peyronies Disease is not normally thought of to start that early (12 years old). But, regardless if it is Peyronies Disease or not, see a doc.
QuoteIt's strange because she has pleasured me with her mouth and hand several times (in a dimmly lit room) and she hasnt noticed the curve (once the penis is in the hand or mouth it's kinda hard to notice the bend as the bend begins at the base and because it doesnt get that hard anymore, it's easy to bend it upwards). I have a feeling that it wouldnt bother her as my penis does still work i guess. But the poor girl thinks she's with a fully functioning male. Have i deceived her by not yet telling her of my curse??
Dim lights or not, I'm sure your girlfriend has noticed. Don't fool yourself. SHE IS STILL THERE!!! Have you tried Viagra? OK, you should tell her about your
condition (calling it a curse is negative language and also just dead wrong). Just tell her and explain it in medical terms. Try to leave the negative emotional language out. If you work together, you will both be satisfied! ;) BTW, how much of a curve is there? You need to read Tim's article on Peyronies Disease and intimacy on the website that goes along with this forum (see link to website above).
As I advise all men in a similar situation, get help. Some kind of professional counselor will help you see things clearly.
Good Luck
Liam
Quote from: Liam on June 21, 2007, 07:55:43 AM
Welcome Sombre Soul (see "Our Histories").
Have you been to a urologist? It sounds like you have a congenital curve. I don't think I'm going out on a limb on this. Peyronies Disease is not normally thought of to start that early (12 years old). But, regardless if it is Peyronies Disease or not, see a doc.
Have you tried Viagra? BTW, how much of a curve is there?
Thanks for the welcome Liam,
I havent seen nor told anyone about this problem. What is a congenital curve and how does it differ from curves that develop later in life?
I've never tried viagra. What does it do? I have a rough idea but dont know exactly.
If you put a banana against your groin and face the curve downwards then thats roughly what i look like down there. I may have a little less of a curve. I never really get hard enough to know for sure.
SombreSoul,
You share a heart wrenching story but not because of the condition of your penis. It is because of how you have let such a thing define your life up until now. I am confident that is going to change if you want it to.
First, your companion totally knows the condition of your penis if it has been in her mouth. She knows how hard it gets, its size, and shape. Nothing can be more obvious than the fact that it is certainly not a problem for her.
Viagra will give you a more firm erection for the period of time right after you take it provided you have sexual stimulation. Before you go that route, make sure it is not already firm enough. Women expel 9 pound babies through their vagina. They can accommodate any curve you have to offer. The worst case scenario is that you may have to try different positions and the the experimentation is as much fun as finding what works. Unless you are not hard enough (try lubrication like K-Y jelly if need be) then don't worry about Viagra. If your curve is very pronounced then being a bit less erect may actually help.
Finally, I am fairly certain you do not have the progressive disease known as Peyronies Disease. As Liam said, it is not a disease that begins as a boy starts into puberty. Additionally it does not start because we sleep on our stomaches. All health males get night time erections beginning prior to birth. If position in the bed, crib, diaper, or jeans caused Peyronies Disease then most men would have it.
You can see a good urologist now or first confirm just how you work in a real loving situation with someone that cares for you, not just the few ounces of flesh between your legs. If it goes as I suspect it will after a few episodes, you will begin to wonder why you ever let this rob a moment of happiness from your life.
Good luck
PS: On a more general note, you will find life much more full of joy if you confront and solve all problems as they arise, not hide them is shadowy secret or avoid addressing them.
The stories you tell are a bit sad, but the key to health is honesty and self-care. You are starting down the right path by seeking help. Now you need to accept it.
I am an independent man - I do not take advice easily. I don't like seeming to be "weak". But in fact, recognizing my connection to other men and women, and my dependence on them, is key to my health and well being.
Master of my domain? I don't think so. When I walk into my bedroom at night, I flip on the lights, and I have NO idea how that works. Oh, I sort of get electricity, and electrons, but filaments, grids, generating stations... forget it. Yet I depend on electricity in my life on a daily basis. So there are many things in my life that I depend on that I do not understand, and that requires faith. You may not think that you have faith, maybe not int he religious sense, but trust me, if you turn on your lights, you have faith. And you depend on the good work and diligence of others.
So now you are here. You are going to have to set aside your pain and accept the help you have been offered. If you stay awash in the sadness that life is different than it used to be, then you will never get better. ASmith, you have gone to a nationally recognised expert on Peyronies Disease - take his advice! Be sad, but go ahead and take his advice!
SombreSoul, I think that you are describing a penis that A) works, B) does not offend or bother your partner, C) has a congenital curve of seemingly little consequence, and D) you are ashamed and sad out of proportion to the "problem" that you describe.
But you guys are here now. There are therapies that seem to help many guys out there, so help yourselves. SombreSoul, if your penis has a "terrible" bend to it, then that can be straightened somewhat by surgery. Just recall that most men with a functioning penis that pleases their partner opt to NOT have surgery that carries the low but present risk of leaving you with decreased sensitivity and/or erectile dysfunction. And go speak to a urologist! I would not be surprised if your weaker than normal (perhaps...) erections are due to psychological stress you have created by worrying.
ASmith, you may very well be a good candidate for medicinal treatments that work helping you. Additionally, you may be a good candidate for surgery if medicine does not work, since you had a discrete major injury (which may argue against a general problem that might recur later after surgery). Either way, the odds are good that you will get all better.
Tim
A great and terrible rain came, and it started to flood. As the flood waters rose, rescue crews went forth to save people. The volunteers waded up to the front door of a woman trapped in her home and asked her to come with them. But she refused, saying "God will provide".
The next day the firemen rowed a boat up to her second story window and again begged her to come with them, but again she refused, saying "God will provide".
Finally, on the third day, the coast guard flew overhead with a helicopter and lowered down a basket to her, as she clung to the top of the chimney in the onrushing waters - they begged her to jump in. But again the pious woman refused, saying simply "God will provide".
And so she was swept away and she drowned.
She had led a good life, and so she did go to heaven, where she gratefully entered the pearly gates. But curiousity got the better of her as she walked through - stopping to ask Saint Peter a question. She said, "Saint Peter - I always led a good life, I prayed every day and went to church every Sunday - and yet you let me drown in my moment of need? Why did you decide to take me home now??"
He glanced up at her and said, "Lady, I provided you a volunteer, a fireman and the coast guard helicopter - what more did you want?"
dunno if this should be here or in off topic, but I'm gonna post it anyway. As I understand it Dr Levine (Chicago) and Dr Lue (San Fran) are THE men to see about this disease. Being as how expensive SF is, and the fact that I'm just tired of Texas, I'm looking at possibly moving to Chicago. This brings me to the point of this post: anyone have any leads in the IT field in Chicago, or can put my resume in front of some people there so that I'm not in the craptastic position of relocating without having a job lined up?
I figure putting me closer to guy on top of his game in treating peyronie's, as well as doing some research, can't be a bad thing.
This kinda made me feel better ;)
QuoteBMJ 1999;319:1596-1600 ( 18 December )
Papers
Magnetic resonance imaging of male and female genitals during coitus and female sexual arousal
Willibrord Weijmar Schultz, associate professor of gynaecology a, Pek van Andel, physiologist b, Ida Sabelis, anthropologist d, Eduard Mooyaart, radiologist c.
a Department of Gynaecology, University Hospital Groningen, PO Box 30 001, 9700 RB Groningen, Netherlands, b Laboratory for Cell Biology and Electron Microscopy, University Hospital Groningen, c Department of Radiology, University Hospital Groningen, d Department of Business Anthropology VU, De Boelen 1081C-NL, 1081 HV, Amsterdam
Correspondence to: W Weijmar Schultz w.c.m.weymar.schultz@oprit.rug.nl
Abstract
Top
Abstract
Introduction
Subjects and methods
Results
Discussion
References
Objective: To find out whether taking images of the male and female genitals during coitus is feasible and to find out whether former and current ideas about the anatomy during sexual intercourse and during female sexual arousal are based on assumptions or on facts.
Design: Observational study.
Setting: University hospital in the Netherlands.
Methods: Magnetic resonance imaging was used to study the female sexual response and the male and female genitals during coitus. Thirteen experiments were performed with eight couples and three single women.
Results: The images obtained showed that during intercourse in the "missionary position" the penis has the shape of a boomerang and 1/3 of its length consists of the root of the penis. During female sexual arousal without intercourse the uterus was raised and the anterior vaginal wall lengthened. The size of the uterus did not increase during sexual arousal.
Conclusion: Taking magnetic resonance images of the male and female genitals during coitus is feasible and contributes to understanding of anatomy.
(http://www.bmj.com/content/vol319/issue7225/images/medium/schw4391.f3r.gif)
Fig. 3. Midsagittal image of the anatomy of sexual intercourse (experiment 12). P=penis, Ur=urethra, Pe=perineum, U=uterus, S=symphysis, B=bladder, I=intestine, L5=lumbar 5, Sc=scrotum
Source (complete paper and illustrations) - http://www.bmj.com/cgi/content/full/319/7225/1596
Thanks for the advice Hawk. It's actually given me some hope!
Quote from: Hawk on June 21, 2007, 09:51:49 AM
You can see a good urologist now or first confirm just how you work in a real loving situation with someone that cares for you, not just the few ounces of flesh between your legs. If it goes as I suspect it will after a few episodes, you will begin to wonder why you ever let this rob a moment of happiness from your life.
So what does a urologist do? If i was to see one, what steps would be taken and what what advice would a urologist give?
Thanks in advance,
SS
Sounds like a new Bob Dylan song.
QuoteSo what does a urologist do?
He or she is the wee wee doctor. ;)
QuoteIf i was to see one, what steps would be taken and what what advice would a urologist give?
He/she will have you pee in a cup. He/she will have blood drawn (psa for prostate) The doc will examine you. That means drop your drawers and he will squeeze your penis. He will do a DRE (finger in the butt checking prostate) Based on what he finds, he may order more test.
***Ask for Viagra while you are there.*** ;). It will make the trip worth it.
If any of us could tell you what the doc would advise, you wouldn't need to go. Recommendations are based on diagnosis. It would be a good idea to rule out a few of the nasty diseases and/or conditions. You definitely need to go.
I read that with interest when it came out, along with an interview with the couple who did the deed in the name of science.
What was really new is that there is a great deal of natural curvature to the entire erectile shaft. I am not sure that this will have much impact on sexual medicine, and it made me wonder about just how creepy a doc might be who decided to make this a research project.
Tim
MRI during sex makes sex photos not seem so kinky. ;)
Who funded this anyhow?
Liam,
your MRI image raised a few questions. For one, why the hell is that I am not allowed to flinch a muscle during a 30 minute MRI if these people can do the horizontal mamba.
I also wondered how much of this was scientific vs. just a kinky MD. It was interesting but you have to wonder if the doctors next research project might be ascertaining nutritional value of eatable underwear.
If you go to a good urologist, he will do an examination of the penis to try to feel for plaque (scar tissue). He will also likely stretch your flaccid penis to see how elastic the tissue is, With a skilled uro, this exam takes only a very brief time often measured in seconds. From there it is anyone's guess. A uro doing a general exam, just like a good family doctor may do a digital prostate exam but since you are going for a specific problem he may follow his gut feelings and check for other issues. He could order a test like imaging if he thinks he needs more info.
Be prepared to share an accurate history of when you first noticed the curve, its progress, history of erectile problems etc.
The visit should leave you with some sense of greater information on what your exact problem is and how to proceed. Rest assured that although this is a new experience revealing this info, that to him it is second nature and he can do doubt carry on a conversation about fishing while performing his exam.
Welcome Johnny!
You had a congenital curve. What made the doctor diagnose Peyronies Disease in addition? I'm sorry for the bad news.
We are glad you decided to join us on this forum. Jump in any time.
Liam
The doc diagnosed it based on the plaque buildup, pain and bend.
That may have seemed like a silly question. Sorry.
The pain and plaque are new and the curve started taking a right hand turn. Was the Urologist familiar with your congenital curve before he diagnosed Peyronies Disease? This is the first case I've seen on this forum of a congenital curve and Peyronies Disease, a double whammy. Its a shame they aren't on opposite sides to cancel each other out. ;) Keep us informed on the Verapamil treatment.
Liam
He was familiar with the congenital curve a couple of years ago, long before the Peyronies Disease diagnosis. Today I start my first round of VI.
Murphy's law sure did it's work this time!
Johnny
I have fairly severe Peyronie's disease. I'm also a physician (not a urologist) and I have some professional expertise that helps with researching and analyzing these kinds of topics.
I've created a blog to accompany my research. It's a personal voice, and I'm very science oriented, so that's what it reflects. No ads, no alternative remedies -- it's my voice, so I get to pick.
If this is something you're interested in it can be found here:
http://thebentnail.blogspot.com/
I'll be browsing the forums here, looking for ideas I can follow up analyzing the biomedical literature and posting the results on the blog.
"Hortensis"
hortenis@gmail.com
Welcome Hortensis...it's always nice to get a physician's view on our problem.
When I first read you post, I was going to ask that you post your information here to the forums in addition to your blog, but after reading your blog, I realized that your quantity of information would quickly overwhelm the forum! You've got a LOT of information in there, and much of it seems very 'medical' (which is not to say that it's hard to understand, but it takes a lot of attention and thought.
Instead, I'd like to ask that you post here items that you deem 'important' to all of us, with links to your blog.
Again, Welcome to the group, and I hope to hear much more from you and your research.
Steve
Steve,
Just as a point of clarification:
Our PDS forum is unlimited in its capacity for members, posts, activity, topics, and different boards and moderators of those boards within the forum (such as Advocacy, Resource Library, etc). We also have the ability to structure any board with a unique look, color scheme, banner, its own posting rules, who the board is visible to, its own unlimited topics, and its own moderator to control that area, This gives the forum almost unlimited structural flexibility and capacity.
I make this point only so future ideas will not be dismissed simply because of a misunderstanding of the forums capability. In fact, we invited one organization with a now inactive forum to participate with us. We offered them their own board within the forum with full moderator control over that board for making announcements of general interest to the Peyronies Disease community. In that particular case, they did not choose to reply to our invitation.
Quote from: Steve on July 05, 2007, 09:18:14 AM
Welcome Hortenis...it's always nice to get a physician's view on our problem.
When I first read you post, I was going to ask that you post your information here to the forums in addition to your blog, but after reading your blog, I realized that your quantity of information would quickly overwhelm the forum! You've got a LOT of information in there, and much of it seems very 'medical' (which is not to say that it's hard to understand, but it takes a lot of attention and thought.)
Instead, I'd like to ask that you post here items that you deem 'important' to all of us, with links to your blog.
Again, Welcome to the group, and I hope to hear much more from you and your research.
Steve
Thanks Steve, I'm seeking guidance from Hawk on how best to participate. I'm committed to the blogging/open source/widipedia model of knowledge building, but I have enormous respect for what Hawk and the management team has built here. There's some tension between the community model and the open model and I'm going to defer to Hawk as to how he wants to manage that.
BTW, I don't know how spell my own pseudonym! It's "Hortenis" but I am prone to mis-spellling it.
First, no offense but i see a 6" worm called Hortenis and I also see a modification of sHORTpENIS and the origin of your name distracts me. ;) Is it either or?
Hortenis,
I have no concern for models only rule #8 under "Read This First". I also felt the need to resolve undisclosed issues that are part of good forum management, thus the PM discussions.
Feel free to contribute to the dialog under any appropriate topic. While this may not be the place, i am curious about Wikipedia since it appears anyone can edit it. In fact I have edited the entry and there is an MD on the forum (Tim) that has extensively edited the Peyronies Disease entry on Wikipedia
I assume this means a prankster can edit it.
hortensis, Welcome to our group! I really wish we had more physicians interacting with us on this forum. I believe that there is a lot we can all learn from you all, given your professional training and expertise. And there might be some things that you can learn from us as well. Thank you also for the great work you are doing on your site by building up a repository of useful research based information.
I have to tell you that I, for one, am extremely optimistic about Peyronies for a number of reasons:
1) Finally, Peyronies is getting attention that it has long lacked. Many urologists who have long operated in the dark are finally taking an interest in treating this disease with cutting edge approaches. And, equally important, many of the myths about Peyronies that have been sort of the common wisdom in the medical community are finally biting the dust.
2) If Peyronies and other forms of fibrosis share a large degree of common pathology, which I believe they do, discoveries regarding other fibrotic diseases will open new doors for Peyronies treatment.
3) I believe that over time the value of Pentoxifylline will become more apparent in the treatment of Peyronies. I believe that Pentoxifylline is currently underutilized by uros and that too many doctors and patients are giving up on it far too soon. Peyronies is a tenacious disease and a just few months of treatment is not going to do the job.
4) Through a combination of diet, exercise, and targeted supplements, I have personally defeated three major afflictions outright in my own life within the last several years. I credit this accomplishment to the mercy of God, all the great research out there shining light in every direction with easy access to it via the Internet and last but not least an extremely caring and open minded personal physician willing to put up with an often difficult to deal with patient not hesitant to ask questions and not always willing to accept simple answers. This includes heart palpitations to the point of being debilitating with a five year history - now 100% gone for over two years WITHOUT medication or surgery, hypertension with a history of nearly 20 years and recently treated with three prescription meds - now 100% gone for nearly four months, and chronic urinary tract infections due to inability to drain bladder completely - now 100% gone for nearly two years WITHOUT medication or surgery. (I am now free of ALL prescription medications ;D ). If there are combinations of life style changes and supplements out there that can accomplish these things, there are certainly likely to be things, as yet undiscovered, that can halt or even reverse fibrosis. I am convinced of that and equally convinced that they will be found within the next few years.
I am nearly 60 years old, but if I were a young person today with Peyronies, I would be very thankful to be living in a time when there is much more hope than ever before that this thing will be forever laid to rest and the people currently afflicted with it will be finally free from its curse.
Once again, thanks for joining us! I now have your site bookmarked and will be a frequent visitor. - George
I go this forum but post quite infrequently. I too am a md and not a cardiologist. I have been quite discouraged by the delay in the Auxilium trials but I did call them yesterday and they are saying they are going to start phase 2B trials for Peyronies Disease in the 4th quarter and restart the phase 3 trials for dupentryn's (sic) in the 4th quarter as well. I can relate an anecdote that happened to me recently. I was put on a short course of prednisone for an unrelated condition and quickly found a change in my erectile proclivity and it also seemed like I regained a little of my lost elasctisity. I noticed it almost immediately.
Kenm, Thanks for the info from Auxillium. They are going to have an audio webcast on Wed. July 11th at 3:30pm CDT. Mark
They took advantage of this little break in the trials to start selling $50 million worth of new shares.
http://biz.yahoo.com/prnews/070613/nyw081.html?.v=101
QuoteI too am a md and not a cardiologist.
I think I missed something. Why did you include "not a cardiologist"?
I, too, noticed what I
perceived as an improvement while on prednisone.
On April 14th I said:
QuoteI think its a good idea to treat the trauma and inflamation, though. Can't hurt.
I have been treating a back injury with some strong nsaids and prednisone (finished that now). My Peyronies Disease which had been painful seems to have "calmed down" as a side benefit. And, erections seem better (no objctive measure, though) .
The pain has not returned (as it was before the pred.). The immediate improvement in ED was short lived.
While it certainly makes sense that Prednisone would be helpful, I don't know whether I would want to pay the price long term. As one who has taken Prednisone before, I can personally attest to the fact that it is strong medicine that can do strange things to one's body, especially if administered over a long period of time. There are, in my non-professional opinion, other non-steroidal anti-inflammatory approaches out there that can be just as effective. - George
It is definitely not a long term drug for Peyronies Disease. Notice, too, I said "perceived". Relieving other pain could have contributed to all the benefits listed. My account should not be taken for anything more than an interesting anecdote.
today i was prescribed a drug called effortil (etilefrinhydrochlorid) for my cronic low blood pressure (90-60). it works via "arterial vasoconstriction". can it have any negative effect on my cronic ED and are there risks involved taking it in combination with VitE and L-Arginine?
What did your doc say when you asked him?
I went back to Dr. Mulhall today after 2 years of living with symptoms of Peyronies described below (including pain during/after intercourse).
There is good news and bad news.
The good news is that he said one area of tough tissue felt better.
The bad news is that he thinks he has identified a plaque that was not there previously.
I told him I still did not have any curvature and he seemed a bit shocked.
I did not get an ultrasound done the last time I saw him, but I will have one done in 2 weeks (for over $800!!!). My insurance will not cover it but I dont care if I go broke saving my penis!!
He did not want to prescribe anything right now but said he would possibly prescribe colchicine/pentox based on the ultrasound.
Quote from: ThisSux on April 14, 2007, 09:15:49 PM
After an injury 2 years ago from sexual activity while not fully erect (after already going twice... :P), I developed 3 hard lines running from the base to the top as well. They are thicker towards the base of the shaft and run straight down to the glans (and get thinner as they go). I have some shrinkage where they are their thickest and also unfortunately daily pain. They feel almost like tendons.
Other symptom is that penis seems much more succeptible to injury.
I went to Dr. Mulhall in NY about 1.5 years ago and he told me "I dont detect any plaques but you do have longitudinal ridges that some people think are indicative of peyronies...I am not so convinced" he also said that I dont have "typical" peyronies disease. I suspect he might change his opinion if I saw him again.
Right now I am just taking 400 IU E, 2 grams ALCAR and 3 grams Arginine daily.
Hello. As the subject says, I'm new to all of this. You guys seem very knowledgeable, perhaps more so than the urologist I recently saw. So, here's my story.
One night, I had too much free time, and the internet offered lots of porn. It felt great, mostly because I was doing something other than pining over my recent ex-girlfriend. Long story short, the next morning when I woke up, my penis was swollen, and even more alarming, there were two indented rings towards the middle, and the rings ran horizontally. The following day I went to see my urologist. The swelling had subsided, but I was still concerned. In about twenty seconds, he looked me over and said nothing was wrong, adding that the swelling would naturally go down. Less than a week later, I noticed that, where the indented rings had been, there were two hard lumps, or more precisely, two hard bands of tissue just under the skin. They can be seen and felt when erected.
Up-to-data: It's been exactly eleven days since the initial swelling/inflammation. The bands are still there. I've had no nocturnal erections that I recall. I'm having difficulty achieving an erection. When I do, some are EXTREMELY weak, and some are normal strong erections. It feels numb, lifeless. However, there's no pain. And there's no curvature, when fully erect. I've scheduled an appointment with Dr. Edward Kim, listed on peyroniesassoc.org. I'm currently taking in one day: two Clariton 10 mg , two Alleve, 3 grams of cheap L Arginine, 2000 I.U. of cheap vitamin E, and just started Horny Goat Weed.
I have several questions. It's only been ELEVEN days!!! Is there anything else I should be doing? In your opinion Liam, George, Hawk, Old Man, etc., what would you do in this early stage?
TS,What can you do differently by identifying plaque with an ultrasound? Take that $800 and go on a vacation.
If your insurance paid, go for it. But, the results, either way, will not change what happens to you.
WELCOME Outsider,According to my reading, most trauma to the penis resolves itself and does not become Peyronies Disease. The symptoms you describe are consistent with trauma. I don't blame you for worrying. I also think its a good idea to follow up with Dr. Kim. Peyronies Disease is not a "sudden onset" condition. Some may link their Peyronies Disease to a trauma. However, the Peyronies Disease was a result of a faulty healing process over a relatively long(er) period of time. Eleven days, more than likely, is not enough time. Google some of these terms with penis: trauma, injury, phlebitis, lymphangiosclerosis, thrombosis and others that come to mind.
Quoteor more precisely, two hard bands of tissue just under the skin
To me, UNTRAINED that I am, this sounds like an inflammation of a vein or lymph vessel. Again, I DON"T KNOW!!!
Anti-inflammatory meds sound resonable until you see the doc.
I am not qualified to make a diagnosis. I just want you to consider the odds against having Peyronies Disease. :)
Good Luck,
Liam
My advice is to keep the blood flowing but be gentle. In my opinion (and this is not medical advice, but everything I have read points to it), you need to make sure you have erections to prevent collagen buildup.
Quote from: outsider on July 18, 2007, 02:28:24 AM
I have several questions. It's only been ELEVEN days!!! Is there anything else I should be doing? In your opinion Liam, George, Hawk, Old Man, etc., what would you do in this early stage?
outsider, sounds like you are doing a lot of the right things at this point. I really wouldn't worry about the quality of the erections, what you are experiencing is normal following trauma. Hopefully Dr. Kim will be of help and perhaps prescribe some Pentox, personally I think it is better to apply Pentox sooner rather than later, but I am not a doctor. Other than that, at this point, all you can do is wait and see what happens from here. The most important thing is to try to put the brakes on the inflammation (non-inflammatory fats and all of that). Also, and you really don't need me to tell you this, try to stay away from the porn. For all of the pleasure it imparts, it is dangerous in more ways than one and it is very addictive. Don't let it gain control over your life. I wish you the best! - George
Hey Outsider,
I think you are on the right track about seeing a specialist. I would definately ask Dr. Kim for a pentox prescription and a prescription for Cialis or Levitra. PDE5 inhibitors used long term have been shown to reverese corporeal fibrosis and venous leak in rat studies.
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17287493&ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
goodluck man
stay away from masturbating for the time being
Quote from: Liam on July 17, 2007, 01:24:45 PM
What did your doc say when you asked him?
only said I shouldn't use PDE5 inhibitors when taking the anti hypotension pill, just wanted to ask if anyone knew more about it
outsider: this all sounds so damn familiar, had an accident with similar effects 5 years ago, kept worsening since then, doctors say they can't feel nothing strange, but they never really take much time - i do feel sth that seems like hard veins. well I've told this story before, the only useful thing i can contribute is what has given me back night time erections: l-arginine + grapefruit seed extract (=a natural antibiotic). i've only discovered that a few weeks ago, since then I almost always woke up with an erection, something that hardly ever happened in the past 5 years. I wish you the best, hope you have more luck than i have had so far.
If I understand correctly, PDE 5 inhibitors "relax" smooth muscle, selectively, in the penis and lungs. This is the opposite of what you want to happen for increasing BP. Did you mention the supplements you're taking to your doc? If not, maybe you should.
Liam
MMM,
Clearly, if you thought to ask us about the effects of combining anything with your new meds on the very day of your doctor's appointment, then you should have covered that with your doctor. Well thought out preparation for your appointment will ensure these things are discussed in your visits and not end up as an after-thought presented to a forum.
As a second choice, you could discuss this with your pharmacist reminding him that L-Arginine is a nitric oxide (N.O.) precursor or N. O. donor and that it is promoted as a vasodialator. PDE5 inhibitors warn against use with a N.O. donor or use by someone with low blood pressure. One of the specific warned dangers from PDE5 inhibitors is a sudden drop in blood pressure. This is especially true in those with low blood pressure or with those taking an N.O. donor.
Liam indicated that PDE5 inhibitors are selective vasodialators. I do not think they are that selective. That is why they cause a stuffy nose, and can cause hemorrhages in the eyes, and cause BP to drop.
QuoteLiam indicated that PDE5 inhibitors are selective vasodialators. I do not think they are that selective. That is why they cause a stuffy nose, and can cause hemorrhages in the eyes, and cause BP to drop.
I agree with Hawk
Hypotension is certainly something that throws a huge wrench into much of what is used to try to treat Peyronies for sure. But, fortunately, it shouldn't preclude the use of either Pentox or full spectrum E or a combination of the two. And the fact that one has hypotension would tend to indicate that one already has a lot of NO activity going on. As for the combination of Arginine and Grapefruit Seed Oil, what is likely happening here is that the Grapefruit Seed Oil is allowing you to better assimilate the Arginine. That is why they warn people NOT to use Grapefruit products in combination with prescription meds. But as Hawk mentions, I would be VERY careful with the Arginine if I had a hypotension issue. - George
Over the last few weeks, I have experienced a rare (for me) mild resurgence in my Peyronies. This occurs at a point where 1) I have been cutting back on Aloe Vera which has the effect of lowering blood sugar levels, 2) I have pretty much achieved my target weight and have begun to consume more sugar laced food than I have for years, and 3) I just had some blood work done and my doctor commented that my blood sugar levels were significantly higher than they have been in the past (nowhere near diabetic, but just higher than in the past). This makes me really curious about the possible role of blood sugar levels in relation to Peyronies. At this point, I am going to, once again, begin to seriously restrict my sugar intake and bump up my Aloe Vera intake and see what effect that has. It is sort of a known thing that Diabetes disrupts the healing process, but I really wonder if even minor changes in blood sugar levels can tip the balance when it comes to Peyronies? - George
Your comments bring me back to this topic:
QuoteResearch has also shown that insulin plays an important role in controlling the proliferation of myofibroblasts during the healing stage of damaged tissue, and is responsible for mediating the formation of scar tissue. Without insulin, myofibroblasts can proliferate to form an abundance of scar tissue. Perhaps insulin is the "smoking gun"?
George, I wonder if you have ever really checked this site out. it is interesting and deserves a good read. http://www.dupuytrens-a-new-theory.com/
If you have comments, post them under https://www.peyroniesforum.net/index.php/topic,65.0.html
thanks george and hawk. will try going back to pentox and stop the l-arginine for some time. also I'm trying natural ways like herbs that raise blood pressure, ginger and so on, maybe even aspirin, I really don't want to take this prescribed medicine for a long time
OK Hawk,
I'm type II insulin dependent, like hot spicy foods, have Viking (Scandanavian) blood in me (about 1/2), am a man, drink coffee, am often sleep-deprived, take beta blockers, am somewhat sedentary... luckily for me, I'm not an alcholic and don't smoke ;D! According to that article you referenced, I'm a prime candidate for DC (which I don't have) and Peyronies Disease (which I do)!
;) Seriously though...This is definately something worth keeping an eye on. I'm curious where this DC site came from? (I just checked...it's from "Kevin" in Kansas City, and is "his" theory on DC). Some parts of it seem somewhat sensational (like the 'possible' links to cancer and Alzheimer's). Still, there are some interesting ideas presented here, and I'm going to try and follow up on some of these.
Steve
I am new to this forum, finding out that I have Peyronies Disease only yesterday. I am asking for no silver bullet just help. What seems to be best treatment for someone without a good insurance policy.( I have a HSA with a big deductable) I have high blood pressure and also have fibromyalgia. I have really suffered mentally to have all this put on me in a really short time. I really think that there may be some correlation between the Peyronies Disease and the Fibro. Anyway, I have always tried to be active in dealing with any problems that I have faced. I want to do the same with this. I have seen so many things here that I really am kinda lost. I have a good family DR. but live in an area that really is lacking in any specialist. I know my family doctor will be open to anything that I can suggest. He has not given me any treatment plan yet as we decided to both do research to find a treatment plan. I being new just hope I have put this request somewhere near the right place. I thank all , Proudaddy. PS. is there a place on here for introductions?
Interesting theories. I can trace back my first Peyronie's symptoms (pain/dent) to the week or so after Easter. I always shop the post-Easter candy closeouts, so I KNOW my sugar intake was spiking at that time.
Coincidence?
Hawk, I read the article you linked and read it with passion from one end to the other. My observation is that the author is really on to something. He may be in left field in terms of some of the loose ends, but as to the core of his conjecture, I think he is right on the money. I, myself, have always suspected that Peyronies (and a lot of other things, like metabolic syndrome) are really just the tip of the iceburg and really just part of a much bigger picture, which is why I have been putting more and more effort into the healthy lifestyle aspect of dealing with this disease. At this point, I am really starting to focus more on blood sugar and insulin metabolism. I have dabbled in this area in the past, but it is going to rise in priority significantly at this point. Insulin resistance is very much a silent disease that typically does not get treated until the insulin can no longer keep up with the blood sugar levels. During this period, serum insulin levels skyrocket which is VERY inflammatory, and tissue insulin levels plunge which is also VERY inflammatory. But as long as blood sugar itself stays in the band, no one pays any attention. Who knows what problems might result from this "pre-diabetic" state? Thanks so much for the link. It contains much tantalizing information.
As for Vitamin D, I have been weighing that issue for some time. What really got me to taking Vitamin D was the fact that I began suffering from Oral Thrush a few months back. I discussed this with a PA and together we linked it with diet and, of course, immune issues. Out of that discussion, I decided that since Vitamin D is a key immune component, I would immediately begin taking 1000IU D3 per day and see what happened. The Oral Thrush cleared immediately and I have continued taking the D3 ever since.
As for the sugar issue, I had been restricting my sugar intake to fruit only before beginning to indulge in the Ice Cream and other Goodies. With the fruit I ALWAYS make sure to take Grapefriut (be careful with Grapefruit if you are on any prescription meds!) and Cinnamon. During this time my Peyronies seemed very much under control and even to be getting 'better'. I have also been taking Chromium, but now will be looking into other products that might address Insulin Resistance. - George
Interesting link? http://www.healthday.com/Article.asp?AID=606585 (http://www.healthday.com/Article.asp?AID=606585)
Dear Proud Daddy (like the name),
Just a quick note before I head home from work. More detail later. You are right to get going right away nod to not wait for months to "see what happens". However, you do not have to act within the next five minutes.
Take some time to read here and to get the lay of the land. There are many ways to learn but the best start is to go to the "Newly Diagnosed Highlight" area to learn more. If you go to the "Home" button that link with have that category right at the top.
Most of us focus on doing what we can do, and gettin ghlpe to see what more others can do for us (ie doctors). For many of us, our focus is on anti-inflammatory medication and supplements.
NSAIDS for pain and inflammation during the acute phase - many of use use advil for that (it may help your fibromyalgia).
Phosphodiesterase inhibitors like viagra can increase erectile quality (often a problem) and will reduce the inflammation in the tunica where the lesion is.
Vitamin E, using a broad spectrum formulation with tocopherols and tocotrienols both (all are important).
And a ton of other things. Many of us use arginine (I do) and other pro-nitric oxide supplements.
Read here a while, take notes, ask for advice, and hopefully we can get yo going. Many of us also use the vacuum erection device (VED) to force a harder and straighter erection, and for many of us, we have seen improvement (I have).
Tim
since my ED problems came on, my testicles never really got hard, they alway stayed sloppy soft/floppy even when my penis was erect. now I've switched from boxershorts to boxerbriefs, a change that SEEMS to have helped that problem, there seems to be more blood in my testicles in general and when my penis is erected, they get hard like they used to in the old days.
After all there are certain testicle-issues where wearing a suspensorium is recommended - briefs do sth similar, fixing the testicles in a position whereas boxers allow them to ...uh - bounce.
does that make sense?
In a word, No. ;)
Damn sloppy testicles. I hate it when that happens.
Quote from: meanmrmustard on July 22, 2007, 09:59:43 AM
since my ED problems came on, my testicles never really got hard, they alway stayed sloppy soft/floppy even when my penis was erect. now I've switched from boxershorts to boxerbriefs, a change that SEEMS to have helped that problem, there seems to be more blood in my testicles in general and when my penis is erected, they get hard like they used to in the old days.
After all there are certain testicle-issues where wearing a suspensorium is recommended - briefs do sth similar, fixing the testicles in a position whereas boxers allow them to ...uh - bounce.
does that make sense?
NO, This post makes ABSOLUTELY NO sense! In fact it is very difficult to believe it is not a put-on! I am not trying to be cruel but I am simply taking a stand against non-sense on a forum that serves thousands of serious people.
Either:
you are pulling our chain as a sick joke
You have NO understanding of male genitals
You have an emotional/psychologica/mental disorder that needs treatment.
Your genitals are so unique that you should consider donating them to a museum of medical science.
Hawk and Liam,,,,,you are so right,this makes absolutely no sence at all..make ya wanna say WHAT ?????
I feel a bit like that old Saturday Night Live routine where Garrett Morris would serve as the "interpreter for the deaf", and would simply shout the headlines after Chevy Chase read them.
I think that MMM is trying to speak to the phenomenon of his testicles pulling up tight with arousal. The testes do not "fill with blood" or "get hard", as anyone with any understanding of basic physiology knows. But many here do not have a clue about physiology (I think MM is one of those folks) and may interpret the scrotum pulling up tight (which does indeed prevent "bouncing"), with the testes getting "hard".
There you go - that is my interpretation of the post. It, like many previous posts, suggests poor erectile quality, and an even poorer understanding of the reasons why that may happen. Most us us have concluded that MMM has a tenuous grasp on the details of how it works. This makes his statements difficult for me to read. But if we can find a way to help him get it, and say what he means maybe we will get somewhere. I wish I could tell if this is a spoof - but it seems more like a real (and confused) post.
Tim
Hello everybody! :D
I am sorry for my english at the first place. I am not a native english speaker :)
I am from Slovakia, capital Bratislava and I am 21 years old.
My problems with penis started when I was 10. I had phimosis since i was 10..I was too young to understand that it might interfere any sexual event. And I was also too shy to say I have some problem with penis...so I lived with it 7 years and when I was 17, I decided to solve this problem out. So in 2003 I underwent circumcision...there were no problems with it. And there were 4 years withou any problem waiting for me.
Till now. Early in May this year I was diagnosed with infectious mononucleosis...I had very bad liver tests and was also in hospital for one week...during that week my liver got relaxed and went to normal...but still have active antibody against Epstein-Barr virus (that causing mono) in my blood..probably its going to be there for a few months. I have been taking a few medicaments...some antibiotics, drugs for liver and some supplement drugs for imunne system (zinc, selen, vit C, A, E).
So. At the end of May, I started to feel, that the whole body of my penis was more hard than usual swollen or something), while flabby (and there was no accident). There was no bend, no erection problem, no pain. I though it will go away after few days. But it had been still there. I was very afraid, I saw something on the Internet about Peyronies disease, but I didnt do some deep study, only read that there is no cure for it ;). I was shocked and deadly afraid, but found a great support in my parents and girlfriend :)
I decided to visit a urologist...he didnt know what it was and gave me drug against swelling....but it had no positive action and went worse. The swelling became more visible and it was on the upper side of the body of penis. Now I can see some notches along the body and the swelling reminds me walnut or something and it is hard, only while flabby.
Now I have also problems with erection, it is not so hard as it was before and two days ago I started to feel random, thorny pain, but not strong and sometimes unnoticed and only while flabby. There is also something hard and visible under the penis skin. I had to visit another uro, private one, because I was very
worried and wanted to solve it immediately ;) Today I underwent Doppler Ultrasonograph to controll veins and vessels and everything was ok. But he suggested me to another specialistic urological survey to one hospital, but they have a vacation, so I have to wait circa two weeks.
I was asking the doctor whether its Peyronies but he told me its not. But thats only his opinion. I still have doubts and I think it is Peyronies Disease. Even if there is no visible bend. Maybe very slightly bend downwards but only when the erection is becoming.
Yesterday I read all this website out, got know all useful informations. I am more calm now, but still afraid whats next, you know. Yesterday I started to take Vitamin E 400mg, I am considering the heat therapy to the future..I also stopped taking Vit C drugs because of inflammatory actions you know..I am not sure if there are some specialists for Peyronies here in Slovakia...and travelling and paying doctors in abroad would be deadly expensive for me.
The worst thing is waiting for another surveys..meantime it could worsen. I hope not ;)
I am also thinking what should start this swelling if there was no accident..whether it is related to the mononucleosis or to some drugs I took...dont know. It appeared and progressed very quickly.
Well, you can write what do you think about it and I hope if I want to know some details about some possible therapy, you will help me. Maybe you will say I am crazy, because no one has confirmed it really
is Peyronies Disease, but it might be better to start some treatment in the accute phase, when its not too late.
Generally I have to say, this site helps me so much to see options for treatment...will wait and will keep you informed.
THANK YOU!
Ralf3
Ralf,
This forum is now yours as much as it is ours, and we welcome you to the forum.
You provided very good background information and your English is fine. I had no trouble understanding what you were saying. I will try to use straight English and not use expressions that are used in our everyday speech.
Based on the picture I get in my mind about what you said, this does not sound like Peyronies Disease but you are correct in doing everything you can to find out what it is. You said it reminds you of a walnut. I have never known Peyronies Disease to result in NOTICEABLE swelling. There is swelling or inflammation with Peyronies Disease but is usually felt in the form of pain. After the inflammation starts there may be scar tissue that can be felt like a hard round pea or a long cord (string) but nothing near the size of a walnut.
In general, I think you should take an anti-inflammatory drug for swelling. My personal opinion is that I would be careful using heat on tissue that is inflamed so much it is swollen. I would also try to eat an anti-inflammatory diet and take good general care of my body (lots of rest, light exercise, relax with no stress). This will help your body try to correct what is wrong. Most of all I would keep going back to doctors to try to get accurate answers.
It could be very possible that you poor erections are caused by worry and concern but it is difficult to know that.
Good luck to you, and keep us informed.
Ralf,
I try to think in simple terms. If one were to take a long needle and to stick it through the penis all the way through, it goes through different kinds of tissue (I am not suggesting you do that!). Then, when we name the tissues it goes through, we can imagine what might happen to that tissue if it were to be inflamed.
The more that one knows about anatomy, the more detailed the list can get as to what is there to become abnormal.
In Peyronie's Disease, the tunica albuginea is the portion that can become inflamed and lead to scar and deviation of the penis. But there is tissue superficial to the tunica, and deep to it, that could also be abnormal in your case. For instance, the skin can become indurated (swollen and hard), much like if you got a bee sting, and you had a localized swelling of the skin. A vein could become thrombosed (clot forms inside it) and swell and become rubbery and enlarged - but that would still not be a problem with the tunica.
So, just superficial to the tunica are at least two different areas that could become abnormal and lead to your problem - the skin and superficial veins. Additionally, there are fat cells that can become necrosed and inflamed in the subcutaneous tissue (though very few are located there, I believe). So, I think the very first thing to decide for you and your doctors is WHERE is the problem located anatomically.
Then you can start to decide WHAT the problem is, and hopefully finally WHY the problem exists. You are doing a very smart thing - you are taking care of yourself by seeking help. Bravo to you for not hiding at home and worrying and coming up with excuses to not seek help. Asking the urologists to help you figure out what is going on is great - and challenge them. Ask that they make it understandable to you. I believe that if a doctor cannot explain what he thinks, his thinking may be too muddled anyway.
Hang in there and welcome to the forum.
Tim
Ralf,
It does not sound like Peyronies Disease to me. Did your doctor guess what was wrong (name of disease or condition)?
Good Luck,
Liam
Boys! ;)
Thank you very very much, I appreciate your answers and I am very happy
that you think its not Peyronies Disease. Anyway, I will keep watching it and will inform you for sure.
As I said, the result of Doppler USG of veins showed no damage or other bad behaviour,
so veins should be okay. I will see. The doctor didnt know what it is, he said it might be
something related to corpus cavernosa. I am also doubting that its classic swelling because
my skin is normal.
Yeah, erection is very closely related to psychic status.. and I have to say,
that since I got to know the curving thing about Peyronies Disease, I have only been waiting for any sign of bending during an erection ;)
Thanks again, you all are very kind people.
I bet, once we will beat all this uro problems up! ;)
Ralf3
P.S.: Liam, thanks for the "Vitaj" :-D how do you know? online dictionary? :-D
Welcome Ralf!
I agree with all of the previous posters. This really does not sound like Peyronies to me at all. I does sound like some sort of inflammation as Dr. Tim and others have suggested.
Therefore, the best thing is to 1) Have patience with your doctors as they do their best to try to figure out what is happening. The fact that you spent years with phimosis before your circumcision might possibly have resulted in this happening later, or it might be something related to the circumcision itself. Who knows? In any case, anywhere in the world, it takes time for doctors to sort through all of it. Your local doctors might not have the best equipment in the world, but for sure many of them are very competent and capable. In the US, while technology is very advanced, medical costs are so high that even a significant number of people here find it difficult to obtain good medical care. So the best medical care for you in this situation is likely to be found in your own country. And 2) Try to avoid inflammatory fats and oils and instead use anti-inflammatory fats and oils.
Also know that this condition may simply resolve itself and you may never know what it was. It has only been a few months now and it may just go away on its own. (That is what we would pray for!) But the most important thing is to continue to follow up with the tests and to give your doctors a chance to figure out what is going on. As for the supplements you are taking, I would be more concerned about the Vitamin A than the Vitamin C. Too much Vitamin A can be toxic to the liver and you should be VERY careful with it. Some people have expressed concern about Vitamin C and Peyronies. I don't believe it. I have been taking LARGE amounts of Vitamin C now for quite a long time and never have had any perceivable problem with it. But I would be VERY AFRAID about Vitamin A. Beta Carotene is the precursor to Vitamin A and is MUCH safer if you are trying to address possible Vitamin A deficiency. ALSO, Zinc, while helpful to the immune system in the right amount will actually impair your immune system if you take too much of it. DO NOT take more than 30mg per day of Zinc and even that amount might be too much. Actually, it is now being discovered that Vitamin D at around 1,000IU per day is one of the best Vitamins for the immune system. But be very careful when you take Vitamins. Some Vitamins can be VERY toxic if you take too much. Vitamin A is one of the most dangerous. People DIE from taking too much Vitamin A! Be careful. Treat them like drugs.
- George
yesterday i was diagnosed with sleep apnea AND left-sided varikozele (by two different doctors of course).
the lung-specialist that diagnosed sleep apnea (after making me sleep connected to a little robot), insists that the problem is my low-blood pressure. i stopped taking effortil because my urologist told me it might have bad effects on my ED problems, I am therefore considering getting a prescription for Fludrocortisone, a medication that raises blood pressure by boosting blood volume. does anyone find clues that Fludrocortisone might be bad for ED or mess with VitE/L-Arginine/grafruitseed?
Did you see German doctors? in Spain? 2 of them?
vaikozele (German)
varicocele (English and Spanish)
I hope I'm wrong. Are you treating yourself by reading internet articles then using us for a sounding board?
Dr Mulhall wants to do a Doppler Ultrasound as he thinks he feels a plaque but cannot be sure. I currently have no curve, but a thickened painful tunica on top, and slight ED. The reason stated for wanting to do it is that if I do indeed have a new plaque (in a different area I might add) then more aggressive treatment might be warranted.
I am a bit paranoid about the injection used to induce an erection. Can anyone explain to me why it is not a bad idea for someone with Peyronies to add yet another injury to their penis? When I asked Dr Mulhall about this when i saw him last, he sort of chuckled and said that it was a very small needle and I didn't need to worry about it...
I asked his nurse if Viagra could be used instead (something I read about other Urologists doing) but was told that Mulhall only uses the injections.
Naturally I am not satisfied by these answers.
Quote from: Liam on July 25, 2007, 10:22:25 AM
Did you see German doctors? in Spain? 2 of them?
vaikozele (German)
varicocele (English and Spanish)
I hope I'm wrong. Are you treating yourself by reading internet articles then using us for a sounding board?
of course not. I returned to austria, my home country, and I am glad to be treated by doctors that speak my language now (german - we don't have our own language, only very strong dialects).
I developed Peyronies Disease 6 months after starting bimix injections with the same tiny needle they use. I too have to wonder how they attribute Peyronies Disease to micro-trauma then scoff when you show up with Peyronies Disease after sticking a needle in your penis.
Quote from: Hawk on October 30, 2005, 06:54:20 PM
There is one area that I cannot remain silent on however.. All evidence from the timing, to the exact location of the plaque, to studies on papaverine and penile plaque all convince me my Peyronies Disease was caused by injections for ED. Evidence suggests that beyond the impact of the needle prick is papaverine itself. It is a component of both bimix and trimix and reportedly carries a higher incidence of penile plaque than some other injections such as Caverject (prostaglandin E1).
Personally, I would try every ED option known to man before I tried injections. If I tried injections I would try everything before I tried papaverine
I presented warnings of plaque from pharmaceutical sites and studies but my doctor was not interested in seeing them.
Do a search on papaverine
After saying all that, I would probably allow one injection. I took 80 before I got Peyronies Disease. The shots do NOT hurt at all. After the little skin stick, it is like pushing the needle into a bowl of apple sauce, no resistance, no pain. Be sure to apply direct pressure with your thumb and index finger for 10 minutes to prevent any internal bleeding. I would also not take any blood thinners because whole blood in tissue (as opposed to in the vessels) is considered an irritant that can induce scar tissue such as adhesions after surgery.
Austria has good docs and you can communicate face to face in your native language. Present all of your concerns to them. The questions you have been presenting here are outside the scope of this forum. They are a little ;) extreme. I would let a doctor field your questions and also control your meds.
BTW, you could join the "Blue Man Group" and be their "Blue Meanie" (obscure Beatles reference from "Yellow Submarine")
EARLIER, I posted a message describing my recent development of lumps. The lumps are mainly noticeable when erect.
PRESENTLY, I've just returned from my visit with Dr. Kim, listed on peyroniesassoc.org. He said he believed 80% that I have thrombosis, and 20% that it could be Peyronie's. He told me to continue taking Vitamin E and Ibuprofen, and if my condition doesn't get better, come see him in the fall.
I guess the doctors have no way of knowing whether, or not, an early condition will develop into Peyronie's. If there was a way to tell, I'm sure Dr. Kim would've tried it. So, now I'm in the mode of... wait and see if I gain curveture, deformity, ED, etc... It's all too exciting.
It seems to that to me (in my case of trauma-induced) trauma leads to an injury which produces restricted blow flow, causing a less rigid erection, which allows the formation of scar tissue, which then leads to deformity, ED, etc.
Therefore, to beat this thing in the early stages, a person must continue to obtain strong and frequent erections that are capable of stretching the scar tissue, meanwhile, keeping the inflamation to a minimum.
Is this a correct understanding of this disease/condition? If so, what's the best way of accomplishing the goal stated in the previous paragraph? What's the best treatments, drugs, herbs, devices, testosterone, dosages, and so on? Thanks for your help!
It is very important to note that trauma to the penis does not always lead to Peyronies. I would actually suspect that it does not usually lead to Peyronies. So it would seem entirely possible to experience multiple thrombosis through trauma and have it heal on its own and never experience Peyronies. But yes, you do need to deal with the inflammation, etc. I would be a little concerned about the Vitamin E, since it is a blood thinner, and if you do actually have thrombosis, that would not be good. But if the doc thinks its OK, he should know. You might want to consider taking some Vitamin K2 (MK-7), since that will tend to counteract the blood thinning effects of Vitamin E without decreasing its benefits. Also, be sure you are taking a full spectrum version of Vitamin E with all 8 tocos. - George
Thrombosis will more than likely go away with time.
"No way in hell this becomes Peyronies Disease", I say confidently. You should give your penis a rest. Also, what George said about supplements. Try a heating pad, too. Just don't heat up your testicles if you plan on reproducing in the near future.
Liam (I'm not really a doctor. I just have a picture of someone who is not really a doctor by my name.)
How can you be positive this injury that Dr. Kim says may already be Peyronies Disease, won't become Peyronies Disease if it is thrombosis?
H. Özkara1, E. Akkučs1, B. Alici1, H. Akpinar1 and H. Hattat1
Quote(1) Department of Urology, Sexual Dysfunction Center, Istanbul University, Cerrahpaşa School of Medicine, Istanbul, Turkey
Accepted: 8 January 1996
Abstract In our center between 1992 and 1994 penile Mondor's disease (superficial dorsal penile vein thrombosis) was diagnosed in 5 patients aged 20–39 years. In all patients the thromboses were noted 24–48 hours after a prolonged sexual act with or without an intercourse. The main symptom was a cord-like thickening of the superficial veins, which were painless or slightly painful. Doppler examination of the superficial dorsal vein revealed obstruction of the vessels. In 2 patients the retroglandular plexus was also involved. Patients were treated with anti-inflammatory medications (Tenoxicam or Ibuprofen). The resolution of the thrombosis occurred uneventfully within 4–6 weeks. No recurrence or erectile dysfunction was noted in any of the patients. Penile Mondor's disease is a benign pathology of the superficial dorsal penile vein and should be taken into account in the differential diagnosis of penile pathologies.
Source: http://www.springerlink.com/content/v040957027258w78/
There are plenty O' links out there saying the same stuff. :)
QuoteDiffuse swelling of the penis in a young adult
The first 150 words of the full text of this article appear below.
Q1: What is the probable diagnosis?
Mondor's disease of the penis. It is thrombophlebitis of the superficial dorsal vein of the penis.
Q2: What is the aetiology and pathology of this condition?
The main cause of the disease is frequent or prolonged intercourse. Other causes are enumerated in box 1. Thrombophlebitis of the superficial dorsal vein of the penis is a benign disease. Clinical and experimental evidence from previous reports suggests that stretching and torsion of the vein resulting from genital trauma leads to endothelial damage and thrombosis. Thrombophlebitis of the superficial dorsal penile vein can be divided into three clinical stages: acute, subacute, and chronic.
Table Removed (Available Only in the Full Text)
Q3: How can this condition be managed?
The majority of the cases of Mondor's disease of the penis are treated conservatively. The acute stage has been treated in a variety of ways with anti-inflammatory agents, anticoagulant drugs, and antibiotics with good results. For subacute and chronic stages, most have used anti-inflammatory agents and local heparin creams. Most cases resolve in four to six weeks. It is important that . . . [Full text of this article]
Source: http://pmj.bmj.com/cgi/content/extract/76/895/311b
QuoteHe said he believed 80% that I have thrombosis, and 20% that it could be Peyronie's.
Thats doctor speak for its a thrombosis but I never say anything 100% because.... well we all know the reason ;)
George,
As stated earlier, my Urologist believes I have thrombosis and states there is the possibility it may be Peyronie's. I know you're not a doctor, but... IN YOUR OPINION, from all of your reading/investigation/studying, would it be harmful to treat this condition as if it were Peyronie's? In other words, if Pentox is the number one treatment for Peyronie's, why shouldn't I just take it, just in case? I've considered seeing another Uro and specifically asking for Pentox. I understand I've sustained some form of trauma that presents itself in the form of "lumps," which may likely NOT lead to Peyronies Disease. So, trauma does not equal Peyronies Disease. Still, I had one of the premier Peyronies experts say, in his mind, there's a 20% chance I may have it. That's more than troubling. I don't understand it. If Pentox is such a great treatment for Peyronie's and has no significantly negative side effects, then why not prescribe in as a backup plan?
Also, what dosage do you recommend for Goat Weed?
Quote from: Liam on July 25, 2007, 10:28:00 PM
QuoteHe said he believed 80% that I have thrombosis, and 20% that it could be Peyronie's.
Thats doctor speak for its a thrombosis but I never say anything 100% because.... well we all know the reason ;)
Prior to my 3rd biopsy, my urologist told me " I am 80 % sure you do not have prostate cancer" Ten days later he said " you have a small quanity of very angry, highly aggressive, prostate cancer"
I think you have to take doctor Kim at his word as giving his sincere opinion. This means with his vast expertise and experience, he thinks there is a real possibility of Peyronies Disease. If he does not give sincere opinions (and I think he does) then it would be appropriate to find another doctor.
While most injuries do NOT result in Peyronies Disease, many do. Having an additional problem like thrombosis does not preclude having or developing Peyronies Disease. In my opinion, the only prudent reaction is to stay calm, assume it is not Peyronies Disease but consider that it could be.
The active ingredient in Horny Goat Weed is Icariin. So the first thing to do is to calculate the Icariin content of your Goat Weed. It is usually standardized to 10%. Right now I am taking 1500mg of Horny Goat Weed per day which equals 150mg Icariin. That is a low dose. In the past I have taken 4500mg HGW per day = 450mg per day Icariin for an extended period. Its effect will be to make your erections stronger and longer lasting just as you would expect with Viagra or Cialis. The difference is that you are taking a low amount of it continually, not just when you need it to perform, as is the classic usage of Viagra or Cialis. So you have to use some degree of judgement depending on how you react to it. The purpose, of course, is to provide an abundant amount of robust erections, not to induce priapism. The right amount would be different for different individuals. It is all a matter of starting out low and ratcheting up until you are at a comfortable level. It is all a matter of judgment.
Pentox. The issue with Pentox is that doctors by nature and training are often reluctant to prescribe drugs unless there is a very clear need for them. Thus, they don't like to prescribe even inexpensive, safe and non-narcotic drugs like Pentox without a pretty solid diagnosis. But if you openly request it, your current uro might consider it, or you might indeed want to go to another doctor and ask for it. Personally, I don't see that it would do a lot of harm, although some users report having had unpleasant side effects, but, again, I am not a doctor, so I can't really advise you on whether or not you should be taking it. It is something you probably need to discuss more with your doctor. - George
Outsider,
Please take this in the spirit of a bunch of peers sitting around coming up with ideas on how to help each other through this challenge..
As George indicated, the question why not take Pentox just in case it is Peyronies Disease, would be best directed at your doctor. I think it needs to be re-emphasized we should NEVER go to a doctor without mulling (and discussing) issues over in advance and making a written list of questions, and comments. It is a bit late to ask plumbers, computer geeks, and truck drivers here on the forum immediately AFTER a doctors visit.
Among other things, Pentox changes blood composition and blood cell structure. Since thrombosis involves a problem with the circulatory system, the questions is, "Could Pentox have a negative impact in a thrombosis patient?" In your case the clot is caused by an injury at the site. Could it cause bleeding? Blood is a tissue irritant that CAUSES scar tissue? All you have to do is ask these questions to know that they are the type of questions that need to be directed to a medical doctor.
Rule 1:
Patients need to prepare for doctor appointments.
Hawk, You make a really good point about Pentox perhaps even wreaking more damage in the case of a thrombosis. I hadn't even thought of that one. I guess these are the kind of catch 22s we pay doctors to figure out. Even so, I would suggest that outsider DIRECTLY ask his doctor whether this might be an issue at the time he inquires about Pentox. Even doctors can overlook things and the best patient is the one who takes an active interest in his own treatment plan and he/she is usually the one with the best outcome as a result. You are oh so right ... it is really important to ask A LOT of questions when you visit the doctor. In the end that will save you a lot of trouble. - George
you're prednisone comment is intriguing. I'm assuming you had it for something completely unrelated. i'm new to this whole discussion forum thing, i've just been reading posts and haven't written a word. this is my first response to anyone.
I need to hear more about the prednisone! thanks!
Prednisone is not a Peyronies Disease drug. I was commenting on it helping inflamation and possibly helping (temporarily) my Peyronies Disease. It is not a short term or long term solution. Check it's long term use side effects. :( I was using it for some back and neck problems.
Quote from: Hawk on July 25, 2007, 03:13:41 PM
After saying all that, I would probably allow one injection. I took 80 before I got Peyronies Disease. The shots do NOT hurt at all. After the little skin stick, it is like pushing the needle into a bowl of apple sauce, no resistance, no pain. Be sure to apply direct pressure with your thumb and index finger for 10 minutes to prevent any internal bleeding. I would also not take any blood thinners because IMO, blood in penile tissue is not good.
hi Hawk,
Thanks for this reply. I am trying to be rational but I really do not want this shot. I guess I feel that I know what is going on and that I should just start pentox and possibly IONTO and that there is no need for the doppler (and no need for another penis wound)
On the other hand, maybe the doppler will reveal something that indicates aggressive treatment is needed?
Dr. Mulhall just wasn't very convincing. In the beginning of the session he told me it was fine that I didn't come in for the doppler two years ago because "it is entirely optional" and then at the end he said he would like to do one. At the time I just didn't think to say "hey lets just treat it as if it were aggressive and forget the doppler".
In general I am not trusting of doctors (no offense to any reading this board, but i have had bad experiences), but Dr Mulhall is a leading expert in this field and if he says the needle is no cause for concern, maybe I should listen to him??
TS,
Do you know if Dr. Mulhall will even prescribe Pentox or Ionto? I have never heard of him having a real positive view of either. When he treated me he seemed to rely on Cholchicine and / or Verapamil injections almost exclusively as his non-surgical approach.
If this is true, and if you know you are opposed to his treatment before you even have the test, then I would suggest trying elsewhere. There are other top uros that will prescribe pentox and many general practice doctors that would do the same.
If he will prescribe pentox and if he requires the ultra sound to do so, I would go ahead. I think a call to his nurse will resolve what he will prescribe and if he requires an ultrasound to do so. You will have to decide if the prescription/requirement combination is something you are willing to pursue.
Quote from: Hawk on July 31, 2007, 11:59:02 AM
TS,
Do you know if Dr. Mulhall will even prescribe Pentox or Ionto? I have never heard of him having a real positive view of either. When he treated me he seemed to rely on Cholchicine and / or Verapamil injections almost exclusively as his non-surgical approach.
If this is true, and if you know you are opposed to his treatment before you even have the test, then I would suggest trying elsewhere. There are other top uros that will prescribe pentox and many general practice doctors that would do the same.
If he will prescribe pentox and if he requires the ultra sound to do so, I would go ahead. I think a call to his nurse will resolve what he will prescribe and if he requires an ultrasound to do so. You will have to decide if the prescription/requirement combination is something you are willing to pursue.
Thanks again Hawk,
I had heard the same as well and so I mentioned Pentox to him. He said that it may or may not work but overall didn't seem to like the idea. Then when we were discussing the other plaque he thinks he may have found, he said that if after the doppler he thought it seemed like a new inflammatory process, he may give me pentox and colchicine.
The problem is that he spoke very quickly and I was in a bit of a daze and didn't really have a chance to say "I want pentox, I want...etc"
The reason I went back to him is because I have tried 4 other Uros in NYC and none of them knew a single thing about Peyronies! One said this was something that only affected people 40 and up, another said he didn't feel plaque and that the pain must have been from something else and another said that it must be referred pain from a varicocele!..etc
None were willing to prescribe Pentox.
I am just getting desperate.
I think I will call his nurse and as you say, tell her what I am interested in and ask if having the ultrasound will actually change my treatment options. I don't want verapamil injections... which he also seems keen on.
While researching Dr. Hellstrom at Tulane, I found this oldie (relatively) but goodie. It may be new for some or a good review for others.
------------------------------------------------------------------------------------------------------
QuoteDiscoveries in Peyronie's Disease: Etiology, Prevalence, and Therapies CME
Disclosures
Wayne J. G. Hellstrom, MD, FACS
Introduction
Peyronie's disease (Peyronies Disease) is a localized connective tissue disorder of the tunica albuginea of the penis with an uncertain etiology. The condition was named after Francois Gigot de la Peyronie, the personal physician of King Louis XVI. Common presenting complaints of Peyronies Disease include palpable penile plaque, painful erections, and curvature of the penis. It is a psychologically debilitating problem, and afflicted men demonstrate a significantly reduced quality of life. New inroads into understanding the etiology of this condition at the molecular and cellular levels are ongoing.
Prevalence of Peyronie's Disease
Earlier studies on the prevalence of Peyronies Disease reported 0.38% to 2.0% of the adult male population being affected; however, the true prevalence is unknown. Schwarzer and colleagues[1] devised a validated questionnaire on this subject and sent out a mailing to 8000 male inhabitants of the Cologne, Germany, area. The response rate was more than 55% and the prevalence of Peyronies Disease in this normal adult male population (mean age, 57.4 years) was 3.2%. In the 30- to 39-year age group, 1.5% observed localized induration; this rate escalated with advancing age to 6.5% in men older than 70 years. Of the 142 men with Peyronies Disease, 58 (40.8%) revealed that they suffered from concurrent erectile dysfunction, a known consequence of this disease.
In another retrospective review, Matkov and colleagues[2] found that 30 (7%) of 453 patients with Peyronies Disease were younger than 40 years. Important characteristics of this younger population with Peyronies Disease included: (1) a defined traumatic etiology usually occurring during intercourse; (2) pain during erection as a presenting complaint; and (3) outcomes of various therapies (either intralesional verapamil or surgical correction) were superior compared with those in a meta-analysis of 50 papers on Peyronies Disease with men of all ages.
An autoimmune etiology for Peyronies Disease has been hypothesized for many years. Hauck and colleagues[3] determined the prevalence of HLA classes I and II in 52 consecutive patients with Peyronies Disease and in 1923 healthy bone marrow donors. They found a significant increase in DRw52 in the population with Peyronies Disease. Other autoimmune conditions recognized to have an increased rate of DRw52 include Sjogren's syndrome, Behcet's disease, systemic sclerosis, and systemic lupus. How the presence of such a specific antigen induces an autoimmune response is unknown; Peyronies Disease is undoubtedly a multifactorial disorder, and the authors suggest that the presence of DRw52 predisposes individuals to the disease's occurrence.
Animal Models of Peyronie's Disease
Animal models allow for controlled experimentation of difficult disease processes, such as Peyronies Disease. Studies using a rat model by Bivalacqua and colleagues[4] employed adult male rats undergoing injection of transforming growth factor (TGF)-beta1 into the tunica albuginea, direct surgical injury to the tunica albuginea, and a control group. Constitutive nitric oxide synthase (NOS) levels were basically unchanged over the course of 6 weeks, but inducible NOS (iNOS) was found to be significantly elevated in the TGF-beta1 and surgical injury rats compared with the controls. Concurrent studies demonstrated decreased intracavernosal pressure measurements to either cavernosal nerve stimulation or intracavernous acetylcholine (an endothelium-dependent vasodilator). To show that the presence of elevated iNOS protein levels inhibited the erectile response, these investigators used the iNOS inhibitor, aminoguanidine. This enhanced the erectile response in these experimental animals. These data provide a scientific rationale for the observation of a 40% erectile dysfunction rate in men with Peyronies Disease.
Innovative experiments can also be explored through the use of animal models. Such is the case in a study that used acellular tunica albuginea matrix grafts in New Zealand rabbits.[5] Each animal had 4 × 8 mm defects made in the tunica albuginea and had these experimental grafts placed. Follow-up studies at 1 and 3 months revealed complete resorption of these grafts and replacement with normal tissues. In theory, acellular tunica albuginea matrix grafts serve as scaffold, which are resorbed over time and replaced with normal host tissues as documented by histopathologic studies. These experimental grafts have been used successfully in the bladder and urethra, and these authors suggest that such grafts may become an alternative when vein material is not readily available.
In theory, Peyronies Disease is a dysregulation of wound healing. To determine whether this is a local or tunical field defect process, fluorescence in situ hybridization (FISH) analysis was carried out on fibroblasts derived from a Peyronie's plaque sample and from "normal" tunical tissue from a place distant from the plaque.[6] Chromosomal instability was documented at the Peyronies Disease site and elsewhere, which was more progressive after increasing the number of cell culture passages, suggesting that Peyronies Disease is a field defect. Progressive chromosomal instability can be anticipated over time and, when combined with the cofactor of penile trauma (eg, intercourse), it can be expected to cause progressive Peyronies Disease complaints, such as penile shrinkage.
In further exploration of the connective tissue components of Peyronies Disease, Elterman and colleagues[7] evaluated the composition of the extracellular matrix. The authors measured the levels of decorin, biglycan, fibromodulin, gelatinase A, and collagenase II in men with Peyronies Disease who were suffering from erectile dysfunction. Alterations of these extracellular matrix proteins suggest an abnormality in the remodeling process in men with Peyronies Disease. Unfortunately, the Peyronies Disease plaque was compared with erectile dysfunction patients only, which may not be representative of the normal process occurring in the tunica albugineal tissues.
Vein grafts have been advocated by a number of authorities. In a canine study[8] comparing vein grafts and tunica vaginalis, no significant difference in collagen formation of endothelial nitric oxide synthase (eNOS) immunohistochemical staining was observed at 3 and 6 months. It is possible that the presence of nitric oxide from the endothelium of the vein may prevent early thrombus formation. Tunica vaginalis is not generally recommended for tunical coverage after Peyronie's plaque excision because of the possibility of herniation. In addition, the dog model is not advocated as an animal model for research in Peyronies Disease, because the dog tunica albuginea does not stretch in a similar fashion to that observed in the tunica in humans. The rat tunica albuginea is bilayered and more similiar to the human tunica; therefore, it is probably the better animal model for the study of Peyronies Disease.
Current Therapies
Treatments for Peyronies Disease include oral medications, intralesional injection programs, and a variety of surgical reconstructive procedures. For the most part, oral therapies are ineffective, and any reported early success with their use is most likely secondary to the natural resolution of Peyronies Disease observed in 5% to 40% of cases within the first 12 months of symptom presentation.
Most patients request a less invasive approach than surgery. An injection approach has been popularized by Levine and Goldman,[9] who reported on 143 men treated in a nonrandomized fashion during the past 8 years. The intralesional injection technique involves multiple punctures, in which 10 mg of verapamil is diluted in 10 cc of normal saline and distributed throughout the plaque every 2 to 4 weeks for a total of 6 to 12 injections. The authors report a decrease in penile curvature in 61% (range, 10-40 degrees), an increase in penile curvature in 8.3%, and no change in 31%. Subjective evaluation by these Peyronies Disease men revealed decreased emotional distress in 85% and improved sexual performance in 91%. The authors suggest that this inexpensive, nontoxic, and nonsurgical alternative should be offered to nearly all patients. No complications were encountered (such as cardiovascular or blood pressure changes), no recurrences were found after 6 years of follow-up, and no specific difficulties were encountered in the surgical correction of men who did not respond to intralesional therapy and needed surgical intervention.
In surgical therapy for debilitating Peyronies Disease, a modification of the Horton-Devine procedure was used in 27 men who had failed medical therapy.[10] Eighteen patients had derma grafts, and 9 received cadaveric pericardial grafts after Peyronie's plaque excision. Though the final reported patient results in both groups were comparable and had similar profiles regarding patient satisfaction, the authors concluded that cadaveric pericardium is an excellent choice of graft material following excision/incision of Peyronie's plaque because it eliminates the time and skill needed for harvesting and the associated morbidity. Elsewhere it has been said that DNA was recovered after cadaveric tensor fascia lata tissue was used for uretheral slings. Ostensibly, the extensive tutoplast preparation procedure reduces many of these concerns, but it is recommended that patients sign an informed consent prior to any procedure. The use of cadaveric pericardial tissue allows the possibility for many reconstructive procedures involving the penis.
In a Dutch study[11] on the results of different plication procedures for either congenital curvature or Peyronies Disease, the authors compared satisfaction results of the surgeons and from their patients' subjective reports. Success with these procedures was higher in the congenital curvature group; a sizable number of plicated Peyronies Disease patients complained of penile shortening, erectile dysfunction, and decreased overall sexual satisfaction. Because this result was more apparent from the patients' subjective assessment, the authors recommend that all patients undergoing reconstructive penile surgery receive preoperative and postoperative sexologic counseling.
Summary
The etiology of Peyronies Disease remains a mystery, and the disease has been demonstrated to affect more of the adult male population than previously recognized. Most authorities believe that Peyronies Disease has a multifactorial etiology, with repetitive microtrauma during intercourse inducing an autoimmune reactive process in genetically susceptible individuals. The recent introduction of animal models to study the cellular and molecular aspects of Peyronies Disease will undoubtedly allow for progress to be made in understanding this enigmatic condition.
References
Schwarzer U, Klotz T, Braun M, et al. Prevalence of Peyronie's disease: results of an 8,000 men survey. Program and abstracts from the American Urological Association 95th Annual Meeting; April 29 - May 4, 2000; Atlanta, Georgia. Abstract 742.
Matkov G, Levine LA, Storm DW. Peyronie's disease affecting the younger male. Program and abstracts from the American Urological Association 95th Annual Meeting; April 29 - May 4, 2000; Atlanta, Georgia. Abstract 743.
Hauck W, Warten U, Hackstein H, et al. HLA-system screening in Peyronie's disease. Program and abstracts from the American Urological Association 95th Annual Meeting; April 29 - May 4, 2000; Atlanta, Georgia. Abstract 744.
Bivalacqua TJ, Diner EK, Novak TE, et al. A rat model of Peyronie's disease associated with a decrease in erectile activity and an increase in inducible nitric oxide synthase protein expression. Program and abstracts from the American Urological Association 95th Annual Meeting; April 29 - May 4, 2000; Atlanta, Georgia. Abstract 745.
Wefer J, Sekido N, Bakircioglou ME, et al. Acellular tunica albuginea graft for functional penile reconstruction in rabbits: a model for treatment of Peyronie's disease. Program and abstracts from the American Urological Association 95th Annual Meeting; April 29 - May 4, 2000; Atlanta, Georgia. Abstract 746.
Mulhall JP, Lubrano T, Thom J, et al. Cytogenetic evidence in support of Peyronie's disease being a tunical field defect process. Program and abstracts from the American Urological Association 95th Annual Meeting; April 29 - May 4, 2000; Atlanta, Georgia. Abstract 747.
Elterman L, Bewsey K, Cs-Szabo G, et al. Connective tissue components of Peyronie's disease plaque. Program and abstracts from the American Urological Association 95th Annual Meeting; April 29 - May 4, 2000; Atlanta, Georgia. Abstract 748.
Henry GD, Coming TJ, Makuli, MJ, et al. Histochemical analysis of vein grafting of the tunica albuginea in comparison to tunica vaginalis. Program and abstracts from the American Urological Association 95th Annual Meeting; April 29 - May 4, 2000; Atlanta, Georgia. Abstract 749.
Levine LA, Goldman KE. Updated experience with intralesional verapamil injection treatment for Peyronie's disease. Program and abstracts from the American Urological Association 95th Annual Meeting; April 29 - May 4, 2000; Atlanta, Georgia. Abstract 751.
Chun JL, McGregor A, Krishnan R, et al. A comparison of dermal and cadaveric pericardium graft in the Horton-Devine procedure for Peyronie's disease. Program and abstracts from the American Urological Association 95th Annual Meeting; April 29 - May 4, 2000; Atlanta, Georgia. Abstract 752.
van der Drift DGF, Vroege JA, Groenendijik PM, et al. The plication procedure for penile curvature: surgical outcome and post-operative sexual function. Program and abstracts from the American Urological Association 95th Annual Meeting; April 29 - May 4, 2000; Atlanta, Georgia. Abstract 753.
Source: http://www.medscape.com/viewarticle/420187
Liam,
Does this have a date on it? He indicates a pretty high resolution rate.
I found this on another site referring to this paper :( . I wonder why the post didn't list the date? Anyways:
Hellstrom, W. J. G. Discoveries in Peyronie's disease: Etiology, prevalence, and therapies. American Urological Association 95th Annual Meeting, April 29, 2000
QuoteFor the most part, oral therapies are ineffective, and any reported early success with their use is most likely secondary to the natural resolution of Peyronies Disease observed in 5% to 40% of cases within the first 12 months of symptom presentation.
Yes he does report a high resolution rate.
QuoteIn another retrospective review, Matkov and colleagues[2] found that 30 (7%) of 453 patients with Peyronies Disease were younger than 40 years. Important characteristics of this younger population with Peyronies Disease included: (1) a defined traumatic etiology usually occurring during intercourse; (2) pain during erection as a presenting complaint; and (3) outcomes of various therapies (either intralesional verapamil or surgical correction) were superior compared with those in a meta-analysis of 50 papers on Peyronies Disease with men of all ages.
Oh to be young. :'(
This is just FYI. I posted it because I know some people will start to be curious. Thought this list was interesting. Just another reason to go to a doctor ;) . I got an "A" 100% ;D
QuoteChoose the responses below that best describe how you have been feeling.
1. Do you have a decrease in libido (sex drive)?
Yes
No
2. Do you have a lack of energy?
Yes
No
3. Do you have a decrease in strength and/or endurance?
Yes
No
4. Have you lost height?
Yes
No
5. Have you noticed a decreased "enjoyment of life?"
Yes
No
6. Are you sad and/or grumpy?
Yes
No
7. Are your erections less strong?
Yes
No
8. Have you noticed a recent deterioration in your ability to play sports?
Yes
No
9. Are you falling asleep after dinner?
Yes
No
10. Has there been a recent deterioration in your work performance?
Yes
No
Source: Saint Louis University Androgen Deficiency in Aging Men (ADAM) Questionnaire. John Morley, M.D., Saint Louis University School of Medicine, June 1997.
Source: http://www.menshealthnetwork.org/timeout/lowtestosterone.htm
I just ran across the following information on elastin.
1) While elastin production in the body declines precipitously at puberty, it does not cease altogether.
2) Elastin is important because it adds elasticity to tissue. One of the effects of Peyronies is to reduce and/or eliminate the amount of elastin in affected tissues.
3) The biological switch for elastin production is cAMP/cGMP ratio. Increase in cAMP shuts down elastin production (bad). Increase in cGMP ramps up elastin production (good).
4) Both Icariin (Horny Goat Weed) and Viagra increase cGMP which is good news in terms of elastin.
5) Forskolin increases cAMP levels which means that forskolin with all of its potential benefits may not be good for elastin production.
6) Since reducing levels of cAMP can lead to increased inflammation, this is probably not a solution, rather the target would need to be increasing cGMP levels IN PROPORTION to cAMP levels.
- George
PS - This post has been modified by me due to an error in my initial post. Icariin actually increases cAMP and decreases cGMP selectively in cancer cells meaning that it may have benefits in fighting cancer. I originally misinterpreted this as indicating that icariin might be bad for elastin production.
Quote from: George999 on August 12, 2007, 06:48:03 PM
2) Elastin is important because it adds elasticity to tissue. One of the effects of Peyronies is to reduce and/or eliminate the amount of elastin in affected tissues.
George,
We those your numbered points or was it copied from some other source. I am specifically interested in #2 above and any source documentation.
Thanks
Hawk
Quote from: Hawk on August 12, 2007, 09:21:34 PM
We[re] those your numbered points or was it copied from some other source. I am specifically interested in #2 above and any source documentation.
They were my numbered points representing my composite of information I have gleaned over time.
Documentation for point #2:
Quote from: NatureA recent statistical analysis of biopsy specimens showed that the tunica albuginea tissues in Peyronie's disease contain significantly decreased amounts of elastin fibers.
http://www.nature.com/ijir/journal/v14/n5/full/3900866a.html (http://www.nature.com/ijir/journal/v14/n5/full/3900866a.html)
Quote from: NatureAnother study found higher than normal levels of anti-elastin antibodies in the serum of patients with Peyronie's disease, suggesting an autoimmune etiology.
Quote from: NatureThe tunica albuginea is composed of fibrillar (mainly type I but also types III and V) collagen in organized arrays interlaced with elastin fibers. Peyronie's plaques are also composed almost entirely of types I and III collagen. While collagen has a greater tensile strength than steel, it is unyielding. In contrast, elastin can be stretched up to 150%, of its length. It is the elastin content that allows the compliance of the tunica albuginea and helps to determine stretched penile length.
http://www.nature.com/ijir/journal/v14/n5/full/3900875a.html (http://www.nature.com/ijir/journal/v14/n5/full/3900875a.html)
I could go on at length here with various research citations, but I'm sure from this you will get the picture. Lack of elastin is not the only component of Peyronies, but it is an important component that must be considered, in addition to the abnormal collagen factor. Only a repopulation with normal elastin cells will restore the TA to a normal condition. That is the bottom line and has to be a factor in considering how to deal with the disease or any other fibrotic disease for that matter.
- George
Ok... This is definitely an off-topic question... I have a picture and I would like to know if it could/would be considered peyronie's disease... Where can i post/send this too?
Roy, I might be wrong on this, hopefully somebody will correct me if that is the case, but my feeling is that most of us are not doctors around here, and none of us that I know of are uros. I really think that the correct person to evaluate your pic is a real honest to goodness urologist who has an interest in Peyronies. While this is a great place for all kinds of Peyronies centered chat, I suspect it is not a particularly good place for serious diagnoses. I know a lot of us have taken stabs at it, in an informal way, but most of that has probably not been very useful and perhaps, at least in some cases, may well have been counter productive. It is really best to leave some things to the professionals who deal with this stuff everyday. Especially in cases like Peyronies. - George
George, I appreciate you being diplomatic. However, I am not going to be using these opinions for a "diagnosis," because that is exactly what they are, opinions. I do believe that some informed opinions from people who have experience with this particular problem could encourage another person to visit a urologist.
Also, I have a question regarding vasoconstrictors. Vasodialators seem to be a key ingredient in the battle against peyronies... But what about a person who is required to take a vasoconstrictor regularly? A friend of mine is ADD, and must take prescription amphetamines daily, apparently causing notable restricted bloodflow to his member.
Not even the top Peyronies Disease specialist would diagnose from a picture. A curve is just one symptom of Peyronies Disease. It is the symptom of several other conditions as well. Lets say you posted a picture and several members said, "Yeah, it looks like Peyronies Disease to me." Then what?
Without seeing it, I say no it's not Peyronies Disease. I read a previous post describing your condition. Now what?
I don't understand your reluctance to see a doctor who is the only one who could possibly diagnose you. But, you are willing to send a picture to a stranger. ???
Consider yourself encouraged.
Hi Roy.
I didn't remember your posting before, but went back and saw that you have posted a handful of times since you originally came here over one year ago. You started off with a confusing (to me) post about your symptoms that did not seem to suggest Peyronie's to me. But you asked in response to our responses to you basicly "what's the point?" in terms of going to a urologist.
You also said, on July 31, 2006:
"But is there anything else anyone can recommend? I know this isnt the proper section for it, but the other ones are convoluted. Any other supplements? herbs? whatever's clever...
Any feedback would be greatly appreciated."
Well, here is some feedback. Go to a urologist. Why on earth would you NOT go to one? Embarassment? Shame? It's embarassing - big deal. It is your penis here you're talking about, not a fingernail.
When you post that a place for pictures would be helpful, that suggested to me that you were trying to find ways toget a diagnosis without going to a doctor. I was about 21 when I developed Peyronie's and I went to my Dad (a doctor) and he got me right in to see a urologist. The upshot was that I learned that either I would stay pretty good (I did), or I would get worse, in which case he would fix me surgically. I was depressed - but I knew what I had.
So why not go? Has it been a year since you first came here, and still no trip to the doctor?
Tim
How else can we say this? Having someone look at this picture is NOT going to help things. If you search Peyronies on Google or even Wikipedia, you will find pictures illustrating the effects of Peyronies. This should tell your friend as much as anyone here could tell him by looking at his picture. The important thing is that he get himself to a urologist who is knowledgeable about Peyronies. The fact that he is taking a vasoconstrictor just makes this all the more important. Yes, a vasoconstrictor would seem to be contraindicated by Peyronies. But the ADD has to be addressed as well. This is a MEDICAL problem which is crying out to be addressed by competent physicianS. No one person can solve this. It going to take a physician who understands Peyronies working together with a physician who understands ADD, unless he hits a rare situation where he encounters a physician who is competent in both (which I really doubt). I think I know a quite a bit about herbs and supps and nutrition, but I wouldn't dare try to suggest anything in a complex case like this. What Tim said applies to your friend just as much as it does to you. HE NEEDS TO GET SCHEDULED TO SEE A UROLOGIST WHO CAN WORK WITH THE DOC PRESCRIBING THE ADD PRESCRIPTION TO SORT THIS OUT! KAPEESH? - George
Hi guys.
I am back with update of my condition..I visited another private doc this week..he was really fantastic, I have never met an urologist like him..we were talking to each other like we were friends for a long time :)
Btw, he wrote several articles about Peyronies Disease here in Slovakia.
So I underwent a USG of my penis and he was explaining me everything what was on the screen during the survey. It was really amazing :) but he told me there was no visible scar tissue on the tunica..he also told me, that it could be better seen if there was an erection, but generally there was nothing bad. Told me to come again next month and we would see then.
But all those changings of my penis I described in my first post are still present and maybe a bit worse..so I am afraid what it really is.
Now I would like to ask you, have you ever heard about any success of urinotherapy in treating Peyronies or other conditions related to penis? Yesterday I read very interesting book about this therapy and there was a little chapter about Dupuytrens Contracture and how to treat it in this way.
R3
Urinotherapy is described as ingesting or otherwise using urine to help heal what ails us. It has not been borne out as helping anything, ever.
I hope that you might have meant something other than urine...
Tim
Check out this interesting discussion on the future of eliminating scars:
http://www.acne.org/messageboard/index.php?showtopic=157005&st=20
Hey guys,
I'm 17 and I'm pretty sure I've got peyronies disease. I'm not really sure when i first had it, but its been over a year, and the mental stress I'm feeling is killing me. The idea maybe not even being able to have normal sex is just such a killer, and my future partners reaction is probably just gonna be worse.
My penis bends to the left with about a 45 degree curve.
It's really hard, being young and all (and maybe even one of the youngest), and being affected by a disease which is usually common with people around 30.
What are my best options, i don't feel I'm up to telling my parents and asking for surgery, but if i don't i would probably have to wait till I'm 18 or over and earn enough money to see a urologist.
Could anyone offer me some advice, for e.g. whether they are still able to have sex properly even with such a serious bend, or some psychological advice.
Thanks.
p.s. if you could, could you also pm your replies, because i fear i may forget to read this forum because i am so secretive of my condition and clear my browsing history.
Anonymous,
It is much better that you remember to check www.peyroniesforum.net
You can be guided by collective effort rather than 20 people duplicating info. When we respond on forum we can build on info you already received which means you get more in-depth information. In addition it is there to help others that read the forum.
Hawk
Anon,
If it is at ALL possible, talk to your Dad. If there is any sort of love between the two of you, his heart will break for his son and he will have a large amount of sadness and empathy for you, but he will be able to help you with the things that you do not yet know how to do (like figure out coverage under a health care plan). You may be better off getting it fixed as a congenital condition rather than as Peyronie's (and it may be congenital). It may require surgery.
So scrunch up your courage, make a time to talk with your Dad, and then tell him what is happening to you. Starting out with honesty will pay off large dividends down the road - believe me.
I know you don't want to discuss sex with your parents. Instead realize it is a urological problem. Maybe that will make it a little easier.
I'm with Tim. Talk to dad. I also agree it may be a congenital (since birth) curve. If you have to, make up a symptom for the folks, then tell the urologist your real problem. When you have the facts, it may be easier to talk to dad. Honesty is always better, but I remember how I felt (and still do) about talking with family about that kind of stuff.
BTW, unless you did something extremely bizarre, masturbation did not cause this.
While I agree with the previous posters that the best course of action would be to talk to dad about this, if you absolutely can't bring yourself to do that, the alternative might be this. Try to make up some creative, but honest as possible excuse to get an appointment with your doctor. Explain the situation forthrightly with your doctor, and ask your doctor to explain the situation to mom and dad AND to set you up with a specialist who can help you out with this. And remember Liam's advice. It is EXTREMELY unlikely that ANYTHING you have done could have caused this, so don't feel like you have to make some kind of confession of guilt over it. It is a somewhat unusual medical issue, but it is a medical issue none the less and not some sort of moral issue. Any competent physician will treat it as a medical issue. We wish you the best. May God grant you wisdom in sorting all this out and in finding support in dealing with it appropriately. - George
Anon:
If I may add my 2 cents worth to the issue. You have been given some very, very good advice on the three previous posts. You would do well to follow their lead, get the appointment with at least your family doctor. Then, explain the whole situation to him/her and ask for referral to whatever specialist he/she recommends. I know that trying to discuss such personal matters with your father or mothe can be a traumatic experience, but DO IT SOON!
I have been in similar situations in the past, but since my father died early on in my life, I had to rely on help from other men for my personal and sexual problems.
So, bottom line, get busy and do something about this soon.
Respectfully, Old Man
QuoteIt's really hard, being young and all (and maybe even one of the youngest), and being affected by a disease which is usually common with people around 30.
Add 20 years ;)
Quotep.s. if you could, could you also pm your replies, because i fear i may forget to read this forum because i am so secretive of my condition and clear my browsing history.
peyroniesforum.net - very easy to remember. It's a forum about Peyronie's on the net. Great mnemonic. ;D
hello - I have been suffering with Peyronies Disease for a while now and lately I am on Pentox, VitE, SAN VASOFLOW (based on the good references from this forum)
I have a nother checkup with my URO soon. He ordered an ultrasound. Now, that requires an injection as far as I know? My question is does this injection have a risk of further scarring and plaque formation ? Is the risk worth the benefits ? In my mind the result of this study will not change the treatment options but I could be wrong.
I do really appreciate all the work that went into this forum and the help that is given through the good advice of the participants. Thanks
Pal,
Welcome to the forum and thanks for the kind words. Also, thanks for registering as a member and posting. This is all that makes the forum work.
You ask a good question. It is so good in fact, that it has been asked by 2 other members on the forum within the last few weeks. You will notice a number on every post right under the header. This post is #668. Scroll down the page of this topic to post # 625 and you will read a post by "ThisSux" Starting there, just read the next posts by him and me on this topic. I think we each posted about 3 times discussing this. See if that helps. If not just yell out and we will be here.
Welcome again.
Hawk,
Thanks for the reference. I think I don't want to risk it, so I may ask to cancel my ultra-sound at the risk of upsetting my URO. What do you think ? Thanks again
It is hard to say what I would do in your situation Pal much less to say what you should do in your situation. I do not have a phobia of a single injection especially if a drug other than papaverine were used. It certainly is not painful in the least.
I think I would question just what difference this test will make, how will the information be used and will it alter the recommended treatment or does it just satisfy some curiosity. I may not use the last phrase since some Uro might take offense if he is overly sensitive, but you get the point. My guess is that when it comes right down to it that he has no other treatment that he would offer and that you would agree to. For instance, he may recommend surgery but if you would not consider it anyway, it is irrelevant so you gained little or nothing. He could say he wants it for comparative purposes to compare to a later ultrasound after treatment. Your reaction may be that the deformity is your only rule to measure progress by so changes in ultrasounds are irrelevant information when it comes to measuring progress.
I would ask the question however and give him a chance to state his reasoning as to how that ultrasound will be helpful in the process of improving the deformity. When he was done I would either tell him that he did or did not sell you on the value vs the investment or risk.
As opposed as I am to routine injections for ED purposes, I feel the risk from a single injection is slight. I would guess I gave myself about 80 such injections. He should have to make a sale on the value however and I don't know what it could be.
I will be interested in hearing the sell, your decision, and his reaction.
Dear Pal,
I also trained as a surgeon and surgeons are trained that "if surgery won't treat it, I don't treat it." Surgeons see the world through a mask. To them, a chance to cut is a chance to cure. Any disease process that has no known cause and numerous "treatments" is a goldmine for surgeons who are trained that "a chance to cut is a chance to cure." Let them do their personal research on someone else, thank you. I agree that any test that is done is to plan a surgical intervention. You and he know that you have Peyronies Disease AND you and he know that you are not having surgery. You can SEE the deformity or feel the same plaque that he can see or feel. Doing an expensive (and debatedly harmful) test that he does not know what to do with the results is foolhardy at best. Will he guarantee his results? Does HE have Peyronies Disease? MOST urologists have no clue about Peyronies Disease and its treatment. The fact that he did not give you clear reasons for the tests means that he is STILL clueless. One must be brutally honest with your priest, your lawyer and your doctor. They will have to decide what to do with the information and give you good advice in YOUR best interest. Informed Peyronies Disease patients are not easy prey for a surgeon's knife. Until they can guarantee results in at least the 50/50 category, I say "You first, doctor." Read and study this forum as it is the best advice and source of information out there BAR NONE. I know, I have looked. Good luck and keep on learning and fighting. It is YOUR penis and no one cares for it more than you.
Dear Pal
Talk to the urologist. If he wants to gauge progress, that is a good thing. However, one could argue that one should wait longer for results (good or bad) with your regimen. That is why we don't take an xray every day with a casted broken bone just to see how it's doing.
OTOH, if you and he had decided to give it a finite amount of time (ie three months and to do an interim analysis, then inject away. Just remember that in the first cases of fibrosis being treated with Pentox, the two guys went for more than a year and one elected to go for more than two years, since progress was so slow (but it was progress!).
Remember this too - if you are actively diseased (ie getting new curvature or plaque), then surgery is not a good option for it will just come back to your recently operated upon penis. For many men, Peyronie's is a sort of one time deal - it happens and then it is stable. Those are the better surgical candidates. Until you know if you are or are not one of those guys (and that takes time) - wait.
Tim
It might be good just to have a picture of what is going on. I haven't had an ultrasound and I'm not going out of my way to get one. But, I think, if my doc suggested it, I might go for it.
The only reason, though, would be to satisfy my curiosity. I would love to see what I've been feeling for years.
Both Bert and Tim offer great advice.
Dear all,
Thanks for the advice. I think I may just skip the ultrasound for this appointment and discuss it with him first since we have not had that discussion yet.
He is a good Uro and to be fair he did not even mention surgery. At any rate , I wont do surgery at all right now.
I will keep you updated with my situation and how the meds are working
Again, thank you all for the thoughtfull responses !
Pal
I haven't read many comments posted on this topic, but I thought I'd share it. Since stopping the pentoxifylline treatment after 4 months and seeing no improvements, I lost all pleasureable sensations during orgasm. After it happened a couple times, it was weird but thought nothing of it. Now it has been a full 2 weeks, and I still have zero pleasureable sensations when I orgasm. Ejaculation is fine, but I couldn't tell I finished unless I saw the "proof". This is really freaking me out, and I find it strange to happen right after I gave up on the pentox. It might be just a coincidence, but I'm at a total loss the cause. Besides prolactinoma, what other physical causes could be responisible for this? Could penile fibrosis or damage cause nerve damage, which could cause this problem? I did loose more penile sensation during the first week I quit the pentox as well, and I doubt both are unrelated. Does anyone know whether orgasm is influenced by penile or prostate nerves, or is orgasm completely controlled by the brain? If it is, aside from depression or anxiety or prolactinoma, what else could cause this?
Well, I think it is a very safe bet it has nothing to do with Pentox. Pentox is not new and not a rare drug. Its side effects are known and documented. Clearly if that were a side effect that was that significant it would be very widely known. Without being too graphic, ejaculation occurs with a muscle spasm in the prostate area propelling the semen down the urethra. It is one thing to feel reduced sensation in the penis because of impaired nerve function. One could speculate that plaque or something was screwing up the nerves carrying the impulse, but to not feel the spasm and ejaculation deep from within seems to be a whole different issue.
In fact, back on the first issue, if there is not the build up and transmission of intense pleasure, then what would drive the orgasm. I am sure you can not sit and meditate an orgasm. If you said I have a loss of sensation and have trouble reaching orgasm, I could easily understand that, but this entire thing puzzles me.
Hawk,
There is indeed pleasure driving up to the orgasm, but at the "point of no return", there is no normal pleasureable finish. You are right, it probably is unrelated to stopping the pentox, but I thought I would just share the experience.
QuoteDoes anyone know whether orgasm is influenced by penile or prostate nerves, or is orgasm completely controlled by the brain? If it is, aside from depression or anxiety or prolactinoma, what else could cause this?
See a doctor. It
could be a tumor on your spine or a brain tumor. Only one way to know. Get my point.
First of all, I do not want to diminish the necessity of seeing a doctor and discussing this. It is imperative that this be discussed with a medical professional, which I am not. But I am a psychologist and I have heard this from people before. Intense depression can bring about anhedonia, but I would expect it to bring about a disinterest first. I took Lexapro for half a year and found my orgasms diminished, are you on an SSRI? Anti-psychotic drugs can occassionaly cause what you describe. Usually they result in erectile dysfunction first but the brain is not understood by medical science yet. There are a wide range of responses. Alcohol can induce reduced sensation during orgasm, and this is a well known fact. Do you drink regularly?
So are you on any other drugs? Discuss side effects with your doctor. If you drink regularly, try going several days without alcohol to see if there is a difference.
Though do see a doctor, while I am trying to give you more info I don't wish to detract from that urgency.
Liam, I'm definately going to another doctor to get this checked out. I doubt I have a tumor, because I have no pain, but anythings possible.
PJ, I havent taken any SSRIs, but I have taken them in the past, but never experienced anything like this.
Never taken anti-psychotics, and don't use alcohol or drugs. I appreciate all the help.
Just joined - and spent the last hour plus going through the threads on the forum. I've been diagnosed with Peyronies Disease for a year and, living in Bangkok, found two urologists who have studied with Lue and others in US. Nothing we tried worked (Vit E and an anti-inflammatory) and was told that the next option was the Nesbitt procedure. I've been feeling a bit despondent with the diagnosis and not seeing a way forward and was desperate for RELIABLE INFORMATION. Your forum has been a website - one which I will track regularly. Thanks for all the work... ;D
Welcome Brillo,
Glad you found the PDS, and glad you posted
When you say nothing we have tried has worked, does that mean, only the Vitamin E and anti-inflammatory you mention? I personally would consider that no more than a very minimum starting point that would be the response from any doctor?
How severe is your curve ?
Hawk
Has anyone tried this?
htttp://treatpeyronies.com/
Link deactivated - Hawk
Grf,
Welcome to the forum...you'll find LOTS of good information all over here. In fact, we've got a thread going on Verapamil https://www.peyroniesforum.net/index.php/topic,26.0.html (https://www.peyroniesforum.net/index.php/topic,26.0.html) where this device and others have been discussed in the past. This is known as Iontophoresis. I don't remember any recent postings regarding these devices, but if you read back in that thread, you're bound to find other's experiences.
Good luck in your research, and again, welcome to the forum.
Steve
Price $1,305.00 :o
QuoteDr. Carroll has kindly agreed that visitors to this website will not be charged the usual phone consultation fee of $78.
Use this unique opportunity to speak personally to Dr. Carroll for free.
Well that was nice! ::)
BTW,
Sawatdee Khrab Brillo. Have in-law from Udon Thani.
NOTE: This price and the quote come from GRF's posted link two posts down
The ending line is a Thai salutation to Brillo 4 posts down who is from Bangkok
Thanks for welcome notes folks. While I haven't been measured my urologist estimates the curve at about 35%. As he has done research on Peyronies Disease in the US he had a slide show on some of the patients he's worked with - which put the fear of god into me when I saw the levels of severity. So, since it's been a year, I've been hoping that my condition was close to being stabilized. He reviewed the options: Vitamin E, Topical Creams (Verapamil), Intralelsional Injections (various kinds i.e. interferon) and surgery. He didn't mention VED. He gave me all the statistics he was aware of regarding the effectiveness of the pre-surgery treatments and stated that none were higher than 30% effective and thus didn't feel that any were worth the financial investment given that my insurance company wouldn't reimburse for any of the "investigational" treatments and all had low success rates. Given what I've read in the Forum he doesn't seem far off base. His recommendation is to sit tight until either new treatments are developed with a higher success rate or when intercourse is not possible or too painful. At that point he recommends the Nesbitt procedure which he states is an outpatient procedure, high rates of improvement, and the only side effect being losing 3mm of length per some percentage of curvature. So that's what I know and that's why I fully appreciate the forum to track other's experiences and new information.
I think it helped me to stabilize a new wound to the penis that was starting to bend quickly, and stopped and went back to the way it was. However, it did nothing for the older areas of plaque/curvature. I did the combination of decadron and verapamil as discussed in the original literature, and then I went to higher dose verapamil that I got compounded (made up specially). That did not work either.
I have a nice cheaper unit for sale though ;)
Also (BTW), I am a doc and we are not allowed to bill for phone calls at all. We cannot be reimbursed by third party insurers either.
Tim
Quote from: Tim468 on September 19, 2007, 08:03:07 PM
Also (BTW), I am a doc and we are not allowed to bill for phone calls at all. We cannot be reimbursed by third party insurers either.
Is that an AMA rule or what? I curious where that "usual $78... fee" came from. Doesn't sound like it is that "unique" after all. ;)
Doesn't Dr. Levine or Lue charge a phone consultation? It seems someone posted that one of them did.
IS this a reputable site we want to promote with an internet hyperlink???
I know that we are not allowed by my employer to bill for telephone advice. It is difficult to get paid or reimbursed, and it is easy to be found at fault on audit for doing it wrong.
Here is a statement (of sorts) regarding this from the American Academy of Pediatrics:
"In summary, the issue of reimbursement for telephone care represents a significant challenge to pediatricians. Faced with the task of meeting the expectations of parents and health plans, physicians find themselves compelled to manage complex medical problems over the telephone, dedicate practice resources, and expose themselves to liability risk with little assurances that these efforts will be compensated. Given the multitude of financial pressures that pediatricians and the health care system at large face, what is a reasonable way to proceed in resolving this issue?
"At a local level, pediatricians are encouraged to work together to gather utilization data and engage the local health plans in discussions regarding this issue. One approach may be for pediatricians who have not billed for telephone services to begin this practice by regularly documenting and billing for telephone care. This will raise awareness among payers and possibly help set the stage for negotiations for reimbursement for this important component of pediatric care.
"At the national level, the issue of reimbursement for telephone care has evolved into a policy priority for the AAP. At this year's AAP Chapter Forum, a resolution addressing adequate reimbursement for telephone care management was ranked in the top 5 (of 90 submitted by the membership) in terms of importance and worthiness of immediate attention by the AAP Board of Directors. Within the Academy, the Committee on Coding and Reimbursement and the Sections on Telephone Care and Administration and Practice Management are working to gather data and develop a strategic approach to improve reimbursement for telephone care. This may include the expansion of existing CPT codes or development of new codes that better reflect the costs and value of telephone care provided by physicians and nurses in pediatric practice. As in all health service-related funding questions, accurate data are a critical tool. Multisite practice studies examining the characteristics and financial impact of telephone care in pediatric practices are needed to support the development of payment methodologies for telephone care and inform these discussions. The Provisional Section on Telephone Care in the AAP can serve as a vehicle to gather and pool utilization data. This data will assist AAP committees and sections as they evaluate and implement strategies to improve reimbursement for telephone care."
http://pediatrics.aappublications.org/cgi/content/full/109/2/290
I paid for a telephone consultation with Dr. Levine in April or May of 07 , seems like it was about $225 for 30 minutes. It may seem crazy to do that, but I had been to 2 urologist previously and they both told me there were no treatments for Peyronie's Disease. Also, Dr. Levine recommended a young wunderkind urologist in Atlanta that I currently use.
D
Thankx for the kind welcoming remarks ... wish I wasn't here.LOL
Sounds like I may just go with Vitamin E for now.
The deal with Dr. Carroll sounded like it was good - logically.
Just can't find anyone with a positive experience.
Dahc,
Your not crazy, I've spent well over $1,000 on peyronies doctor visits, and treatments, and have seen three different urologists. There are some things in life you will do anything to protect, or spend your whole savings on to save if necessary, thats normal in my opinion!
Comeback
No, doctors are not "forbidden" to charge for a phone call consultation. Yes, a doctor would have to be a fool to do one. My liability insurer will not cover me for stupidity such as giving advice over the phone. Doctors can and do get sued for advice they give on the street, on the phone or over the internet. The best specialist to be is a proctologist because no one will ask you in the middle of dinner or church to "take a look and tell me what you think." Remember too, advice is no more valuable than what it cost. You only get what you pay for, IF you are lucky. Doctors "sell" information and peace of mind. All else is window dressing. If you want your doctor's honest time and attention, pay him. If you want him to remember you, don't.
Tim's words got me thinking as well. not just for Peyronies Disease but also for other problems that we as men might suffer from. I can think of premature ejaculation as being another troublesome issue.
Hitman,
Since I could make no connection between your post and my review of Dr. Levine's book, I moved your post to this topic.
I just saw this message in my inbox today:
QuotePeyroniesDisease • Peyronies Plaque
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Group will be closed/shut down
Posted by: "Todd" tanman0512@yahoo.com plaque_is_bad
Thu Sep 27, 2007 4:56 pm (PST)
Group will be closed/shut down
Lack of activity and a lack of time on my part, this group will be
deleted on or after September 30th
Todd
I'm sure glad that we don't have a lack of activity!
Here is a link to a Webcast from AUA annual meeting. There is a 20 minute lecture from Dr. Levine about Peyronies Disease, click on the link: Non-Surgical Treatment of Peyronie's Disease. Liam, there is something I think you'll agree with about Peyronies Disease resolving spontaneously. And Tim, there seems to be some development on a Peyronies Disease questionnaire sponsored by Auxilium, should we be skeptical? Please keep working on yours Tim.
http://webcasts.prous.com/AUA2007/article.asp?AID=87&CID=YY&CLID=2
I found the links on erectile dysfunction very informative too.
Dahc,
Good link, but I never found Dr. Levine's webcast. I went to "Official Webcasts" and checked each category.
I did watch an EXCELLENT presentation on testosterone however.
When you activate the link you will be on the Home Page, scroll down and you'll see several topics underlined including Non-Surgical Treatment for Peyronie's Disease. Each topic is a link to a webcast, just click and pick your media player. 8)
DAHC
Thanks Dahc. I was not looking on the home page but going to the "Official Webcasts" page.
There are some great informative webcasts on that site. I found the Levine webcast good as well as the 2nd webcast on this page http://webcasts.prous.com/AUA2007/article.asp?AID=83&CID=YY&CLID=2 It is on testosterone replacement, indications, myths, side effects.
The talk by Levine was pretty good. The Flash Streaming Video of the talk included a short clip regarding injecting the verapamil. He stated that he makes as many as "seven or eight" puncture wounds but as many as "eighty to one hundred passes" into the plaque. That strikes me as much more likely to be like the Leriche technique than simply due to injecting the verapamil.
In the clip it was clear that the penis he was holding had a firm nodular plaque that he could actually grab a hold of and gradually fill with Verapamil. I realize (now) how different my Peyronie's is than that sort of disease, and how little there is that is palpable. I noted that the original Leriche technique article does not think it works as well for non-plaque disease. This makes sense since it the technique consists of multiple stroking motions across the surface of the plaque to leave a lot of tiny partial thickness cuts in the plaque that allow it to stretch out (which is different than multiple puncture wounds). Nevertheless, I wonder how much of the improvement is due to increased stretchiness of the plaque as it gets "Swiss-cheesed" into submission.
Tim
The clip was interesting. If you noticed, he made a point of saying the object was to leave the drug in the needle traces as opposed to the objective being to make holes in the plaque, then he showed a demonstration that could led one to think the opposite. Maybe that is why he stressed it because of the appearance.
The video should be
required viewing for all men here. Good info!!!
:D :D :D
GOOD JOB DAHC!!! :D :D :D
Quoteit gets "Swiss-cheesed" into submission
LOL Well said, Tim! ;D
Hawk and Tim, I thought the same thing after seeing the injections. He poking the heck out of that plaque.
Hawk/Liam,
Is there anyway to get a copy of that webcast and place it in our 'Newly Diagnosed' thread? It looks like a very good starting point for someone who's looking for information on the current state of treatment.
There are a few issues.
The first step would be that I would not consider using it without Dr. Levine's blessing.
The second is that video sucks up huge amounts of server space with our host as well as transmission band width. When I get a chance I will have to review the webcast again and see if a transcript along with a short clip on the VI might not be sufficient. If we could count on it staying on the AUA website, linking to it would be sufficient.
I was strolling through the polls area and noticed a short thread between Hawk and ComeBackKid regarding a PDS 'business card' and/or a letter to Uros...has anything ever developed from this? I did a search on Business cards and only came up with the hits I'd already seen.
Steve
Steve,
On the question of developing a business card, or brochure, and contacting doctors, the short answer is no. We have no one functioning in the position of Director of Awareness and no one to assist in that area. This was the arm of the PDS undertaking that mission.
In my 2 or 3 years administering the PDS I have found that it is very difficult to find necessary people possessing the things needed to make a success of such campaigns. The things needed are people with:
1. talent / skills
2. Willingness / interest
3. time
4. commitment
My experience is if one of these things is missing, it is no better than if they are all missing.
As a result, I do what I can and wait for the need people to wonder in to the forum, or for those that are here to experience the necessary change. We can see from the child board (Angus), and a few other projects, what even one person can do when they possess these 4 commodities.
Amigo said:
QuoteI'm new here, but have been lurking for quite awhile and have followed research into this topic for the better part of a decade. I believe that vitamin E is a very conservative protocol for Peyronies disease and its benefit is not very well supported from what I've seen. It shouldn't hurt and may possibly help, but I think that long term use would be called for. I don't think ten days of treatment would accomplish much of anything.
In the way of a presentation, I'm 34 and have been struggling with this for about a decade, hourglass was initially bad, but then got noticeably better for a number of years. This summer I've noticed a significant hardening of the plaque and a corresponding increase of curvature to the right as well as increased pain.
Liam, I have found your responses to be generally thoughtful, but I do take issue with your advice to this young man not to worry about peyronie's until age 50. As someone who got nailed with it in his twenties, I can only envy any of you who spent the best years of your sexual lives without having to worry about it, but there are a significant number of us who are hit early and hit hard. I know we don't fit the typical profile, but it doesn't negate our existence.
I'd personally advise the new young member to go to a Urologist and seek a professional opinion. I didn't have a real noticeable plaque at the beginning either, but did have hourglassing. I think everyone is different. I also think that anything you can do earlier rather than later is for the best. I'm finding that calcification is a real bitch and wish I would have attempted more treatment options earlier on. For now I'm turning back to VED and adding traction as well as taking Pycnogenol and Ginkgo for better erections (I was also taking arginine, but started to have cold sore breakouts - so I dropped it for now). Good luck to everyone. You can count on me to post more often now that I'm having to address this head-on again. Thanks for everyone's input in advance.
Amigo,
Although in the tail of the curve, I will admit the possibility of Peyronies Disease in the 20's. Sometimes these maybe injuries, sometimes not. However the likelihood of contracting Peyronies Disease at age 14 or 15 (as Charlie stated) is very remote. He also stated a lack of plaque. Again, not likely Peyronies Disease.
So, my advice for Charlie was intended for him, not a blanket statement on the possibility of contracting Peyronies Disease at any particular age. You are so correct about seeing a urologist.
Thanks for telling us about your case. I know someone will read your post and will be able to relate. I look forward to your future posts
The key is the amount of deformity, Charlie. I guess it is possible you have a conginital curve. If it is functional, though, leave well enough alone.
Liam,
I appreciate your reply and hope you didn't take my first post here as any kind of personal attack. I really have appreciated your numerous posts on the boards and your skeptical (i.e. realistic) sensibility. It just made me nervous not to have the young man in question at least have things checked out by a professional sooner rather than later. I remember how hard it was for me to get up the gumption to take a problem that I was initially quite embarrassed by and go see the dick doc ;) Thanks again for all your comments to date. I certainly look forward to many more years of your insights. Unless of course, the heat/traction protocol you're trying turns out to be THE CURE, and we all end up never having to think about any of this again (a guy can dream). Personally I'm encouraged with my brief (two week) foray into traction... but that's another post for a differnt thread. Take care... and as always... best of luck to all.
--amigo
Amigo,
Your point was well taken. I question almost everything. I appreciate being questioned myself. It helps clarify my views, change my views, or something in between. :) Any of these are good for intellectual honesty.
Don't hold your breath on the heat/traction being a cure. It has helped one aspect of the condition for me. And, BTW, ahem, cough - cough, it's the heat/traction REGIMEN. Protocol belongs to the VED ;) :)
You may refer to it as the "REG" ;D
I considered the "heat/traction discipline, but that conjures up the thought of B & D. Given the nature of traction, I decided...uh....NO! ::)
TO THE MODS: Is there anyway to have a RESEARCH/ABSTRACTS sticky thread or separate forum where we could collect links to abstracts about supplements/treatments. Individual posters could list their favorite abstracts beneath the primary post and someone could edit that primary post periodically to include links to the newly contributed abstracts. I guess the goal would be to have one big master list of research links. I've seen so many abstracts in the various forums on here, but after awhile it does get hard to keep track. I'm just starting a list of my own favorites, and wondered if there would be interest from others in creating such a master list online. Personally, I'd envision it with separate headings for Peyronies Research, Erectile Dysfunction, Related Research (Dupuytren's, etc.) I'm not trying to be lazy... just expedient. If it has been tried before and didn't work... let me know.
As I read the comments on various supplements and mechanical methods to help with our disease it seems that nothing really works. Some say what they do or use are of help because things are not getting worse. Surgery seems to do the job for some and not others. With surgery what good is a straight penis with nerve damage where you can't feel anything.
I hear of heart pumps to help restore damaged hearts. Lots of work has been done for breast cancer. You can get a liver transplant or some hair transplant. Your vision can be corrected by laser. So what is being done for us? Not much as I see it. So I get to live out the rest of my life with a penis with a 90 degree bend. I have been told that my penis is not 100% of my life but this disease has given me a mental anguish that will never stop. With some diseases a person can say I do have some hope of being healed or at least it will end soon. My son who has MS has a drug he takes. It comes with no guarantee but at least it has a chance. So tell me what chance do I have???????
QuoteMy son who has MS has a drug he takes. It comes with no guarantee
but at least it has a chance. So tell me what chance do I have?
At least this disease is not life threatening.
I'll take this over cancer or heart disease any day. In fact, I didn't have a choice in the matter, so I might eventually have to take this and the other two.
My point is that no progress is being made in finding a cure / recovery from this disease. Why do the
urologists see you when they know there is nothing they can do for you?
I share your frustration, MusicMan. I could venture several guesses about bogus (or at least crappy) research that looks legit and a sincere doctor who feels like he or she ought to do something.
The truth is we just have to hold on (not much choice) and wait for the breakthrough. There are a few doing what I, IMHO, feel is legitimate research.
In the mean time, try some of the more promising treatments. As you know, I'm using the heat/traction regimen and I'm better off than 4 months ago. It not a cure, but improvement is better than getting worse or staying the same.
The cure for Peyronie's is going to come from research into fibrosis. And there is significant research happening in that area. For example, in this month's Scientific American there's a brief article about research aimed at ameliorating the fibrosis that occurrs as a side effects of radiotherapy for cancer - and this is a huge problem. They're looking for drugs to prevent the fibrosis by blocking our old friend, TGF-beta.
Quote from: amigo on October 12, 2007, 08:47:58 AM
TO THE MODS: Is there anyway to have a RESEARCH/ABSTRACTS sticky thread or separate forum where we could collect links to abstracts about supplements/treatments. Individual posters could list their favorite abstracts beneath the primary post and someone could edit that primary post periodically to include links to the newly contributed abstracts.
Amigo,
That is worth a try. If you want to collect some and group them in a post maybe I could transfer them to the "Research Library" board. Instead of that we could consider a topic on the main board. I think I prefer the "Research Library" however.
QuoteThe cure for Peyronie's is going to come from research into fibrosis
J,
I agree with you. Help for us will be the byproduct of research for another fibrotic condition.
We must address the cause of plaque and treat it. We must also eliminate the plaque that is already there. I believe these are distinct issues and may not, necessarily, have the same treatment.
QuoteThe cure for Peyronies Disease is going to come from from research into fibrosis
QuoteI agree with you. Help for us will be the byproduct of research for another fibrotic condition.
Why is that?
The solutions will come from the smartest and best funded scientists working in this general area. So far with few exceptions, those scientists are not urologists. Anthony Atala is one smart guy, and Cadavid-Gonzolez is another. Tom Lue is smart and a quick adaptor, but I am uncertain of the originality of his work. He is, however, quite productive and determined to get the field advanced forward. All the rest are fairly common and mundane IMHO. When I read "studies" like the recent one from NY which had such a deceptive title about verapamil efficacy, or yet another "studY' out of Texas about Verapamil cream, or another Italian study about ALC.. well, I don't get too inspired.
Tim
Hawk - I say that because Peyronie's is fibrosis, part of a group of disorders known as the 'superficial fibromatoses', all of which exhibit the same biochemistry. Fortunately for us these seem to be genetically distinct from dangerous 'deep' fibromatoses like Desmoid tumors. Check this link:
http://www.nature.com/modpathol/journal/v14/n7/full/3880374a.html
Tim468: Yes, for whatever reason, the research done from a purely urological perspective has been of low quality. Fibrosis in other parts of the body is easier to evaluate, change is more measurable, patient participation is easier to secure. Research into something like improving radiological treatments for lethal cancers can attract big money. That's the context in which the problem of excess TGF-beta (or whatever the culprit turns out to be) will be solved.
Quote from: j on October 17, 2007, 11:23:37 AM
Tim468: Yes, for whatever reason, the research done from a purely urological perspective has been of low quality.
Why is that?
I understand related fibrosis. My question focuses more on asking
why we do not have more specific , high quality work focused on Peyronies Disease by the urology community and pharmaceutical companies.
I very much agree with J. In fact, I would say that we would not know much of what we already do know about Peyronies if it were not for research actually directed at other forms of fibrosis. The whole Pentox approach was really adapted from the use of Pentox for other forms of fibrosis. The key part that has been based on Peyronies research itself has mainly had to do with linking Peyronies to other forms of fibrosis. And the big breakthrough indeed will come from research on other forms of fibrosis that will eventually be adapted to Peyronies treatment. - George
I think the reasons are complex. The urological community is not populated by the best and the brightest, IMHO (with a few exceptions mentioned before). People go into it to operate - it is a surgical field. SEcondly, there is more to be done in "hotter" fields like prostatic disease and cancer - which as you know all too well is not a trivial pursuit.
Basic bench science needs to be done. There are more important diseases like heart disease that a small improvement will save the lives of millions of people. Here, a small improvement won't make much difference.
The model of the CF Foundation (CFF) is relevant. An orphan disease, it did not turn around until parents banded together to make the CFF, and then they sought out the smartest scientists and paid them directly to stop what they were doing to work on CF.
For all the reasons of isolation we have discussed previously, men with Peyronie's are not likely to bond together to form a similar organization that will push the boundaries forward.
Tim
Quote from: Tim468 on October 17, 2007, 01:38:56 PMFor all the reasons of isolation we have discussed previously, men with Peyronie's are not likely to bond together to form a similar organization that will push the boundaries forward.
Tim, I think this is a major key. I suspect that Peyronies is WOEFULLY underreported, since it is likely that a lot of men who have the problem would rather die than even share it with their doctor. I think a lot of men consider it to be a shameful thing that strikes at the very foundations of their manhood and they prefer to keep it a deep dark secret till the day they die (and beyond, if at all possible). In addition, there is an unspoken societal attitude toward such things that prefers to deny their existence (other than, perhaps as punishment for some of the most abominable sins imaginable). So there is simply little impetus to investigate such a condition. ED once occupied the same dark environs, but then when the large pharmaceutical companies found that there was gold in them thar hills, that whole paradigm changed and ED is now a household topic (for better or for worse). But I really doubt that Peyronies will ever turn out to be the same money machine that ED has been, so that door is pretty much closed as well. Our best hope is really in all those parallel diseases that are likely to generate treatments like Pentox (but more effective than Pentox hopefully) that can be used off label to our benefit. And because of the research pace going on with so many other regenerative diseases these days, I believe that is not an empty hope.
Quote from: Tim468 on October 17, 2007, 01:38:56 PM
The model of the CF Foundation (CFF) is relevant. An orphan disease, it did not turn around until parents banded together to make the CFF, and then they sought out the smartest scientists and paid them directly to stop what they were doing to work on CF.
For all the reasons of isolation we have discussed previously, men with Peyronie's are not likely to bond together to form a similar organization that will push the boundaries forward.
Tim
Thank you Tim. That was the reason to the "WHY" that I asked and that is where I wanted to focus attention. Much of the reason that we will wait for a "byproduct" of research on some other area of fibrosis is because of the Peyronies Disease community of patients. Thus far, we have chosen to wait. That is our right of choice, but I will never believe that we could not change that if it meant enough to us that we did all we could do. In my opinion, we have not earned the right to bitch about what the professional arm of the Peyronies Disease community is not doing.
It is the way it is largely because that is the way we choose for it to be.
Hawk, sorry I misunderstood your question. My take-away from that item in Scientific American was that big money IS going into research on fibrosis now, for a couple of reaons. One is that fibrosis caused by radiation is a serious limiting factor in cancer treatment - if the side effects could be controlled, more cancers could be irradiated all the way into remission. Another reason is the fear of muclear terrorism - the feds are releasing tens of millions of dollars for research aimed at treating radiation exposure, and that includes fibrosis.
And, I'm organizing a million-man march in Washington DC to draw attention to Peyronie's. We'll start at the far end of the mall and march toward the capitol - when we're about halfway there, we take a 45 degree bend to the right...
OK, J,
Your march idea made me smile ;D. I think it is a novel catchy idea.
While I agree that fibrosis research will benefit Peyronies Disease, do not however discount the work in tissue engineering and gene therapy that is making remarkable strides.
I am 100 percent behind gene therapy research - it alone should, in theory, be able to cure anything that we as humans are naturally suceptible to get. Given time.
And that's the issue. Hawk, do you beleive that gene therapy for peyronie's (or indeed, for anything else) will be available in our lifetime? I'm 23, and even I can't forsee gene therapy helping me personally. My kids, maybe, my grandkids definitely - but we only recently (within the last 10, 15 years) fully decoded the human genome. I wish gene therapy would be available ASAP, but when you're talking about a field that was virtually science fiction twenty years ago...
Ocelot,
Did you view the clip under developmental treatments I posted yesterday???
http://www.history.com/media.do?action=clip&id=mm_hts_gene_therapy_broadband
If so the answer was gene therapy within 10 years and tissue engineering within 3 or 4 years. I am not sure I would hold my breath that it will be available then but in you normal life time, there is no doubt. They can already grow an animal penis or vagina in a lab (I think you will only be allowed to have on or the other ;) ). They have also used gene therapy to rebuild a working rabbit penis that had all the erectile cavernosa tissue removed. They believe they have also successfully tested gene therapy on men with ED to provide 12 to 18 months of functional erections with one injection.
Hey guys
Didn't really know where to put this. I have posted a couple of times and just wanted to give the report from my initial uro visit yesterday. I have been to him before and really like this guy, I explained my injury back in June, he gave me an exam, pulled, stretched, squeezed...He could not palpitate any plaque. But he did say that it would only take a small piece of plaque to create a bend. Himself and his group was fully aware of Dr. Levine's work and has been to conferences where he and others has spoken. This doc has done many injections but in my case he would not consider because of the lack of finding plaque. I mentioned Pentox, Traction, and some of the other treatments. He thought traction was showing promise and was one of those things that wouldn't hurt anyway to do. He didnt want to consider Pentox at my stage because of the fact he didnt think it was "proven" enough to start a treatment. His opinion was that a large percentage of men get better and they will claim one treatment to another, but how do you know if it was the treatment or just getting better on it's own. The good news for me was that he wanted to monitor me and he thinks within a year I will be ok, and he said he has seen cases where it goes away almost overnight. He did say though that there is always a possibility it will get worse or stay the same. His group did a group of men a few years ago with radiation treatment, 100% of the plaque was taken care of but 1/3 of the guys went impotent. He thought it was a good idea for me to keep doing the Vitamin E, Traction (with heat). He was telling me that he just was seeing a patient with a severe curve that was considering surgery, he starting using a VED and within six months he had calmed down to about a 20 degree curve. Now again he said that who knows how much the VED helped but it sure looked promising. Anyway, just wanted to put my story out there about my first visit since this has started. By the way, I am using traction and heat, even my wife told me the other night the curve didnt look as bad as before. So who knows.
Hey Antony,
I tried to reply to your message but it said your box is full. Could you empty some messages so my reply can come through?
Thanks.
A.J.
Did your doc offer a reason why he thought it would improve? Was it because he didn't feel plaque? I hope he is right. I'm also glad the traction and heat seem to be working.
He just said he has had several patients over the years that have gotten better without any treatment, and several that has gotten better with some sort of treatment, but he said without intense studies from the medical community you cannot prove that one treatment works over the body healing on its own. He has given several Verapamil injections and has seemed to have success, he wouldnt at this time on me. He said that Dr. Levine says the same thing in his lectures but is very proactive in treatment. He said some guys just can't afford doing all of these treatments and they aren't even proven at that. He didnt sugar coat it though, he did say I might get worse or never get better. He thought it was to my advantage that my injury occured while the penis was flaccid instead of erect, and that he couldnt feel any plaque in a pretty intense exam. I am still going to do the traction, Vitamin E, and heat though, I feel better doing something.
Hello everybody!
I am back to share my condition experiences with you again...
Well first I have to say, there has been some progression in my condition what naturally makes me more and more worried about my future life...I posted my last message sometimes in August and since that I can say, there are several more dents over the whole tunica (not only lateral sides as before),there is also one deeper indentation on the left lateral side, slight loss of lenght (maybe 0.6 inches) and girth, my penis is less elastic, it is all hardened when flaccid, slightly less sensitive, some veins visible under the skin are narrowed, there are some palpable and non palbable (but visible) short ringlike lupms that are soft and moveable, random not very sharp pain. Actually there is no bend, but when the erection begins, it curves downwards, but it dissapears when fully erect.
As I wrote in my previous posts, I am circumcised since 2003 (I was 17) (because of untreated phimosis since I was 10) and I have been suffering from infectious mononucleosis since May this year. They also discovered Staphyloccocus aureus on my glans later in August..well, I believe that this mono has something to do with it..but the strangest thing is, that I had no injury, no sex in the initial and later stages of mono..I was in hospital for one week and then I was only at home, I needed much rest and sleeping, because my body was exhausted. So no sport, nothing...and once, I felt that my penis is somehow more hard than usual....a strike from heaven. ???
I still can achieve good erection (but he onset is slower and sometimes unable to maintain for longer time), I still can have an intercourse, also strong orgasms, morning erections, but I feel and I know, my penis is ill and that unknown illness is slowly progressing. This makes me very depressed sometimes..you know, the fear about the future and everything..
Well I have been suffering since the very beggining of June. Have visited a few doctors, with no exact solution, only these magic words: "if you want to heal, buy viagra." They have made me several SONO surveys, but nothing was wrong in there.
So I decided few months ago, I will treat myself by myself for some time...Since September I take vitamin E (400 mg daily) , complex of vitamins B called Pangamin (4 pills 2-3 times daily, since October), topical applying of special Tea Tree cream (every night, since November), Bromelain (1000 mg per day, only three days yet).
Want to take also Gotu Kola and/or Ginkgo, considering L-Arginine or Acetyl L-carnitine.
The only thing I dont want to take are strong drugs, like Viagra...first, its deadly expensive...here in Slovakia it costs cca 500 slovak crowns (21 USD), average month sallary is cca 18.000 Sk (782 USD) and imagine that many many slovak people earn only around 13.000 Sk (565 USD). No way of regular buying this thing...and then, it may also have bad side effects, you know.
And in case of Pentox, I think that no slovakian urologist would prescribe it, because they have lack of or no information about using it to partially treat fibrotic actions.
So. Boys, what do you think about all these things? Is there any chance for me? :)
I have very good girlfriend (thank god!). She always encourages me by saying: "Everything will be okay." She also prays for me (so do I)..We started to go out in February this year (that time I had no idea what is tunica albuginea or who is Francois de la Peyronie ;) ). I told her about my problem in July and we had our first sex in September. And that time, it had been already 4 months that my penis illness was on. She was (and is) not complaining of anything (maybe she doesnt want to hurt me :) ), like she dont find it so good any more because of the loss of size of my penis or something, you know.
The only thing I am scared of sometimes (to be honest, many times) is that one day (when my tunica or both cavernosas will became one big scar tissue and unable to expand), she will cheat on me or break up with me...this is the only thing that has been making me nervous last months.
Well, so this is my story, this is my suffering and I STILL HOPE it will stop progressing one day or even reverse somehow...we never know what can happen.
Sometimes I wonder, is sex making this fibrotic conditions worse?
Thanks for this greatest site on the net (along with the online pharmacies ;) ) and thanks for your further advice.
Ralf3 (21)
Slovakia
Came across this while just cruising around the internet. I never really dared to think that any of the newest genetic techniques could actually be effective in healing or growing a new body part because I couldn't fathom how it could happen. I could not envision this organized redevelopment of an organ, which is obviously comprised of various tissues. Tissues...no problem. But not organs. Well...how about a brand new organism from just 1/276th of the original? No problem...
http://www.nsf.gov/news/news_summ.jsp?cntn_id=107916
Some of you out there who are really struggling day to day with this problem, just keep in mind the number of bright people out there developing new strategies for fibrotic disease. Soon something will come along that will improve our situation for sure...maybe even cure it!
Ralf, hang in there.
The infection is a very big "trigger" for inflammation - so it seems unusual but a very likely cause of your Peyronie's.
Many of us have weathered this disease for years, still having sex and still getting hard (enough) and still screwing up like anyone else does in relationships. Your girlfriend may cheat on you - you can't control that. But you can get help for your fretting and worrying for that might hurt you much more than she will.
I would work hard at stretching the penis daily with the VED or the traction device. Many of us have found one of those to be the most helpful part of healing. I would also work CLOSELY with your doctors to make sure that the staph is gone. You don't say if it was in the skin or deeper - but if it persists, it can cause damage and if it is methicillin (an antibiotic) resistant staph, it can be very hard to get rid of. Repeated cultures and close follow-up is very important. If it is all gone and you are now dealing with the aftermath, you may do quite well, even heal up completely.
Tim
Hello, I'm new to this site and Peyronies Disease. A few months ago I found an hard lump on the shaft of my penis and went to doctors and hopital and was diagnosed with Peyronies. On reading about Peyronies on the internet, the symptoms (fitted the bill), as they say completely and i am just starting to accept the lump and pain, which on a positive note seem to be getting better.
The reason why posting this post, is that I have now found another small, but hard lump on the shaft of my penis near the head of my penis. Is this normal within Peyronies to have more than one hard lump????
Can and do people with Peyronies have more than one hard lump?
Thank you,
Craig42:
Yes, one can experience more than one hard lump or plaque on their penile shaft with Peyronies Disease. In my case, I had two hard lumps, one large area of plaque as well as an hour glass indentation of one side which later went away, only to develop on the other side.
So, bottom line, Peyronies Disease can manifest itself in just about any place on one's penis. It seemingly has a mind of it's own and will do just about what it wants to do.
Suggest that you read as many posts on the main forum as you can about symptoms of Peyronies Disease, their cause and just maybe a treatment that would work to help you. All of us here have seen many days of suffering with Peyronies Disease, ED and other men's health problems.
If we can help in any way, feel free to call upon us.
Old Man
I know that this study was done on diabetic mice but I thought I'd post it. Please feel free to remove it to another section if its not suitable
Protective effect of Withania somnifera (Solanaceae) on collagen glycation and cross-linking.
Department of Biochemistry, Islamiah College, Vaniyambadi 635 752, Tamil Nadu, India. pvanandhbabu@gmail.com
Modification of collagen such as non-enzymatic glycation and cross-linking plays an important role in diabetic complications and age-related diseases. We evaluate the effect of Withania somnifera on glucose-mediated collagen glycation and cross-linking in vitro. Extent of glycation, viscosity, collagen-linked fluorescence and pepsin solubility were assessed in different experimental procedures to investigate the effect of W. somnifera. Tail tendons obtained from rats (Rattus norvegicus) weighing 250-275 g were incubated with 50 mM glucose and 100 mg of metformin or Withania root powder or ethanolic extract of Withania under physiological conditions of temperature and pH for 30 days. Formation of advanced glycation end products (AGE) was measured by fluorescent method whereas the cross-linking of collagen was assessed by pepsin digestion and viscosity measurements. Tendon collagen incubated with glucose showed an increase in glycation, AGE and cross-linking of collagen. The collagen incubated with W. somnifera and metformin ameliorates these modifications. The ethanolic extract of Withania showed more prominent effect than Withania root powder. The activity of ethanolic extract of Withania is comparable to metformin, a known antiglycating agent. In conclusion, Withania could have therapeutic role in the prevention of glycation induced pathogenesis in diabetes mellitus and aging.
PMID: 17329138 [PubMed - indexed for MEDLINE]
Very interesting. Withania somnifera is commonly known as Ashwagandha. But while this is indeed interesting, what worries me more about it than the fact it was done with mice is the fact that it is an "in vitro" study. There are many "in vitro" miracle substances around that subsequently proved useless "in vivo". At this point, I just happen to be taking Ashwagandha for the past several months without the slightest knowledge of this study or any clue as to anything anti-glycant about Ashwagandha. I have been taking it for other reasons, but this is certainly interesting to know. Thanks Hitman! - George
Hello. Seven months ago after a long bout of sex, my penis became swollen. Eventually, three places arose. I saw Dr. Levine, who said I had a rupture. He put me on Pentox and Arginine.
Now, SEVEN MONTHS LATER, here's my best description... the places are lumps, slightly bulging. They can be seen and felt, but are really no big deal. They look mainly like small ridges. When flaccid, the lumps can hardly be felt or seen. Only when I have an erection, do they become noticeable. As far as my erection goes... when it starts there's a slight curvature to the left, but as my penis fills with blood, the erection straightens completely.
So George, Hawk, Tim, Liam, etc...
It's apparent you guys have done a ton of research. I think this is a significant question and topic.
If someone injures their penis (fracture, rupture, etc.) and no curvature develops... and there are still strong, frequent erections, when can you say this guy won't get Peyronies Disease? This really turns into a more general question... How long does it take injuries to the penis to heal? Then, if it's completely healed and there are no Peyronies Disease related symptoms, you can conclude this man doesn't have Peyronies Disease. Does anyone know the magic number on this? Six months, one year, etc?
As it pertains to my situation, I'm curious about this time frame, because I wonder when I'll be able to stop stressing about it and know that it fully healed without development of Peyronies Disease.
All answers/comments appreciated.
Well, my personal opinion is that if you've gone 7+ months after your injury with no noticible bend while erect, then you don't now have Peyronies Disease! For me, the bend started about 2 months after the injury, and has been stable ever since it started!
I don't think that this means that you'll never have Peyronies Disease, anymore than you can be guaranteed not to have some form of Cancer in the future. However, I think that your chances have fallen back to the probability that anyone in the general populace could develope Peyronies Disease.
In other words, stop stressing over what isn't there now, and look to the future with a positive outlook -- stress never does anyone any good.
Steve
gbb
I don't ahve a great time fram e to give you, but it seems that you are mostly out of the woods.
I cut my arm years ago and still carry a scar - you may have a penis that looks different than it did before the incident for the rest of yor life. But that is different than a disease that causes progressive contraction of a scar-like tissue. One is normal wound healing (and you certainly suffered a wound!), the other is abnormal wound healing, which is labeled Peyronie's Disease.
It seems that smart and aggressive therapy helped you dodge a bullet, and how much more gains you will have over time are not clear to me. I do note that in the published case reports of penile injury treated with Pentox, that one person kept it up for two years and saw more gains than had been found at one year. FWIW, that may mean you have more "healing" to do yet.
Tim
Being 28 years of age, male Caucasian from Denmark, I believe that I have been living with the condition Peyronies Disease for almost four years by now. Possibly my condition is worsened by other complications, which means that from day one, I have had difficulty in obtaining and maintaining an erection. Consequently, my sex life has been dramatically affected and being a bachelor, I find it hard to engage in relationships due to the fact that I feel that I have been deprived of part of my manly hood.
Throughout the years of frustration with no doctors being able to give the ultimate solution, I have studied the subject carefully from the limited sources available on the internet. Posting this on Peyronies Society is my "last resort" and I hope that someone here with sufficient knowledge and experience will be able to respond with advice and hopefully ideas on what to do next.
Unlike many others with this condition, I do not have a visible bend and the plagues themselves are not visible. My biggest problem lies in erectile disability, poor sensation of the penis as well as poor ejaculation and orgasms and the lack of spontaneous erections. I will try to sum up the history of my condition – running through the problem itself, the diagnosis and post and current treatments carried out.
Cause & Problem
In May 2004, I realized that I had a wart behind the head of my penis in the area that I believe is referred to as the coronal sulcus. At the time, I was living in Malaysia and my doctor gave me some cream to apply. However, I did not follow instructions carefully and unfortunately, I left the cream on for too long. The foreskin became very red and inflamed. I did not worry about it and I carried on with sexual activities with my girlfriend at the time. Sex was painful and I remember one episode, where I experienced terrible pain in my penis. It was as if I had been struck by lightning.
Soon hereafter, I developed a string like artery or vein (I think it was the left dorsal vein running through the entire length of the penis). Erections were painful and soon the string was replaced by some sort of ring, which was under the foreskin. Best to describe the appearance would be like a thick rubber band trapped under the foreskin behind the penis head.
As "lucky" as I am, I also ran into a serious beating at that time, where I had a few serious blows to the face and forehead (I am not sure if that has any relation, but I guess that I will never know).
I began experiencing difficulty in obtaining and maintaining an erection, but my doctor said not to worry and that I should give it a few months. However, things deteriorated and after a few months I could hardly get an erection. I went on holiday in my home country, where I saw a urologist. He mentioned Peyronies Disease because he could feel some nodules and what not and that it could take up to 18 months to resolve by itself. I waited in agony, but nothing really happened. I saw many so-called specialists, but all were confident that it was psychologically related. Let me say here, that until the incident, I had been sexually active and fit for many years with no problems.
Finally, I was referred to a specialist in urology or let me rephrase that, a guru in this field of medicine in Singapore. His name is Dr Peter Lim.
Diagnosis & Initial Treatment
Dr Peter Lim immediately noticed that I suffered from seriously inflamed foreskin behind the penis head. Furthermore, he could feel a lot of nodules, plagues, fibrosis etc. He referred to these, using these names. It was suggested that first of all, I should get rid of the foreskin and have a circumcision carried out. Due to poor state of the foreskin, I was told that I could develop cancer later on, if it was not removed. It was beyond savable in other words.
Surgery was successful and after a few months, I did see an improvement in erectile quality. It was the first time in years, that I was actually able to get a 80% erection. Before, with hard work, I could only get to about 60%.
However, I was still not satisfied. I wanted to solve my problem and get to the bottom of things. We discussed many alternative treatment options and I started to read about vitamins, minerals etc. Furthermore, I underwent one treatment of ECTS (Electrical Shock Treatment), from which he had had good results for other Peyronies Disease patients. I am not sure, whether it worked. I think one treatment is not enough, but it was very expensive, so I had to forget about that idea.
All this was done in 2006, where I also got a Dobbler Ultrasound as well as a cavernosography carried out. Both tests showed normal blood flow. Unfortunately, theses tests can't measure the blood flow at the tip of the penis (foreskin and penis head), which is where I believe that most of my problem lies.
By 2007, my contract in Malaysia was finished, and I had to travel back to my home country, Denmark. From the clinic in Singapore, where I had received a lot of help, I asked to get a document, which would describe what I had gone through there. Here is what it says:
Patient XXXXX
The above was seen in this clinic on 3 May 2006 for a chronically inflamed, soggy & painful balantis & preputial skin infection with multiple thrombosed veins at the dorsom of the the distal shaft and just behind of the top of the coronal sulcus. There was a thick and unyielding inflamed frenular web causing ventral chordee and there were several underlying thickened plaques within both penile corpora cavernosa diagnosed to be possibly peyronies plaques or fibrous plaques consequent on his previous history of trauma he sustained to his penis.
As he had erectile difficulty a cavernosography and caversometry was done on 4 May 06 showing no evidence of veneous leak causing his erectile dysfunction. A circumcision was advised to get rid of the painful beefy red and inflamed preputial skin with the thrombosed superficial veins (phlebothombosis). This was successfully done on 5 May 2006.
Although most of the infected skin was removed, some of it still remains and I can feel a lot of hard plaques underneath.
Current Treatment
Having returned to Denmark, I am again left with frustration. I am caught in the welfare system with long waiting lines to see any doctor. Before Christmas, I did see a urologist, but he just confirmed my condition as Peyronies and went on ranting about people, who have lived with this condition for years. He said that there was no treatment and that I should learn to live with it. To overcome my erectile difficulty he just gave me the same old story about Viagra etc, which I have heard a 1000 times before. This however, is not a viable solution for me. I want to return to normal and I want to try everything possible to achieve my goal. I know that it is not going to happen over night, but I am also certain, that there are many more options out there than this ignorant "urologist" told me. I guess it all comes down to the fact that as long as nothing has been documented, doctors working in a welfare model society are not allowed to consider other alternative treatment options.
I feel that I have to see the same doctor again and confront him with a few facts. This is partly also, where I need help from you. I have an appointment on April 14th 2008, so it would be appreciated to receive some advice before that.
Here's a run through of the vitamins that I am taking currently:
335mg vitamin E twice a day before meals
K-vitamin twice a day
750mg L-Arginine twice a day
Omega 3 capsules twice a day
1000mg MSM bio sulfur twice a day
Gingko Biloba twice a day after meals
Previously, I have tried Brommelain, Pentoxiphyline, Fibrozym, Nattokinase and Acetyl L Carnitine. Pentox is not a good option for me in the long run. I took it for more than half a year. It is expensive and to be honest, my ass was bleeding everytime I went to the toilet. Soon I will resume with Fibrozym, Nattokinase and Acetyl L Carnite, as I believe that I had quite good results with these products. (I felt that the penis tissue softened up).
Current Situation
As mentioned, I am now living in Denmark and I feel that I am left with little help from doctors and urologists. If anyone on these boards have any information on specialists in Peyronies Disease and erectile dysfunction located in Denmark, Scandinavia or even Northern Europe, it would be well appreciated. Furthermore, if anyone could provide a "check-list" on what to ask my urologist during my up-coming appointment, it would also be highly appreciated, as I already know the outcome of that appointment with my current knowledge base about the subject.
To sum up my current situation, living with this condition, I can say that I think about it everyday. Not an hour goes by without thinking about this and why I have to be different than everybody else. Why should I have to worry about all this stuff at only 28 years of age?
I can feel that the tissue in my penis is hard compared to what I can remember it felt like before the incident. I feel that pain comes and goes in the whole groin and penis area – especially at the root of the penis, but also in the testicles as well as behind the penis head. Generally speaking, there is a lot of tension down there. My foreskin seems thicker than it was in the past and as previously mentioned, there is a general lack of sensation and no spontaneous erections during the day. I do however have occasional nocturnal erections, which is probably around 80%, but the head of the penis is not as full as I remember from the past. That is also a general thing to note about the erections that I can produce. The penis head seems very "un-aroused".
I have noticed that when I am really tired, I do tend to have easier erections, although they are still not 100%. Also if I have been drinking, I have noticed, that erections are easier to obtain the day after. A funny thing is that once in a while, I can obtain a spontanieous erection (80%) if I am riding a bumpy bus.
My sex life has been extremely complicated and I have had to take various pills to get a good erection. These erections are however not good for me. They seem fake and I do not have much sensation at all. I have tried Viagra, Cialis and Levitra.
Sometimes I can achieve penetration with maybe 80% erection without using any PDE-5 inhibitor, but I have to pause and concentrate to maintain the erection – otherwise, I will loose it to around 60%, where penetration can't take place.
The problem with these drugs is that erections seem very strange. I get a lot of pain in the penis (possibly because I get full erections that push against the plagues). Furthermore, I get a terrible hard-beating sensation, my head flushes, I get headaches and I get really tired
General Considerations
Could this be complicated by a different ED condition and in that case, are there any specific diagnostic procedures and treatment options for these conditions?
o Hypogonadism-associated ED
o Penile Vasculopathy
o Penile Fibrosis
o Mondors Disease
o Severe head trauma
Would it be an idea to try Viagra on a regular basis to force erections? What about Trazadone, Verapmill and penis vacume pumps and more ECTS for long term treatments? I know that frequent erections should be good to promote good health in your penis.
Last but not least, I have the bad habit of smoking. I am not a heavy smoker, but I do realize, that this unfortunate habit posses a big threat to me with this condition. I am however cutting down and starting from this coming week, I will put it on the shelf for good.
I know this was a long inlay on these discussion boards, but I hope that you will all welcome me here, as I have a feeling that I might spend much more time here in the future.
Your kind thoughts are very welcome and any ideas, suggestions for treatments and my up-coming visit at the urologist are appreciated. I would especially like to hear from people, who do also not have a bend but are still diagnosed with Peyronies Disease and who are also suffering from ED simultaneously.
Sincere regards from one struggling Peyronies Disease sufferer.
Bongo
WOW what a story!
1st QUIT SMOKING
The plack and scar tissue are the most probale cause of erection problems. I'm 65 and have scar tissue and plack in the corpora's from peronies and injections for erections.
You need to go to the VED section and get a good VED. Be careful and start of slow. If left untreated plack and scar tissue in the corpora's can cause penile shrinkage from lack of normal erections. OLD MAN has a great VED routine.
Vitamin E in 400 IU three times a day helps in some cases but I know of no meds that will cure the plack and scar tissue in the corpora's. If some of the fellow on this board know of some I'm sure they will let you know.
Good luck, you need a good Uro.
Jackp
Bongo, Welcome! First of all, let me just say that I fully second all of Jack's remarks. Smoking, VED, Vitamin E, he is exactly right about all of those. Above all, smoking will actively promote the process that is causing your problems. You should be seeking medical help in dealing with that issue. The faster you can eliminate smoking from the equation, the better off you will be. However, I would add the following:
1) There are ONLY two oral treatments that have shown any measurable success in treating Peyronies in a research setting. Those are Pentoxifylline and Acetyl-L-Carnitine. Thats all. So those are the two I would focus on. Since Pentox causes bad side effects for you, Pentox apparently is out. That leaves ALC. So, if I were you, I would make ALC a cornerstone. But remember, any successful treatment of Peyronies is going to be a VERY long term project.
2) Personally, I identify Peyronies with a process known as Glycation. Glycosylation is a normal process in the body wherein glucose is purposely joined to protein. Lately researchers have identified a rogue version of this process which fuels fibrosis. This is known as "Glycation". One of the few things that Pentoxifylline and ALC have in common is that they are both antagonists of Glycation. Since there are a quite a few anti-Glycants around, I have been building a supplement stack of anti-Glycants. Those are serving me well and not only preventing my Peyronies from becoming worse, but I am actually experiencing a very gradual improvement with shrinking plaques and increasing flexibility. Here is my current list:
Carlson Aloe Vera Soft Gels - Protein Turnover Agonist
Benfotiamine Inc. Benfotiamine-V - AGE-Breaker
Jarrow Formulas Pyridoxall with Pyridoxamine - AGE-Breaker
Jarrow Formulas CarnitAll 600 - Anti-Glycant *Includes ALC*
Now Foods NAC - Anti-Glycant
Now Foods L-Carnisone - Anti-Glycant
Natural Factors Mangosteen Super Strength Extract - Anti-Glycant
Now Foods Pyruvate Extra Strength - Anti-Glycant
3) Nothing speaks louder than success. I have really been contemplating a post in the "Improvement" thread by myrddin back in June of last year. He notes experiencing very substantial improvement and also notes which supplements he had been taking:
Quote from: myrddin on June 18, 2007, 09:03:17 AM
I had my latest checkup recently with my Urologist (Dr. Culley Carson, UNC Chapel Hill) and was able to report some improvement, so I thought I'd share the same info with my friends here too.
I've been on Pentox almost 9 months now, maybe it takes that long for it to kick in or something. (?)
Background:
At 2-3 months of Pentox, my condition (upward curve) continued to worsen slightly, and had developed a slight left-sideward deviation as well.
At 4.5 months of Pentox, my condition had stablilized but not improved.
Now at 8.5 months, I can definitively say that all sideward deviation is gone. My unit's perfectly centered when erect. The plaque on the side (where it used to curve left) cannot be felt anymore. Also, the upward curve is, in my subjective opinion, not as bad. Visually it does not seem as sharp an angle as I remember it was a few months ago. Intercourse has been easier lately and my unit does not seem to be as easily bendable, at the point of the curve, while erect.
All of this improvment has just occurred in the past 2-3 months. It may be just due to the Pentox, but I had also made a few changes in my Oral Supplements at that point in time. I replaced Arginine with Sann Vasoflow and tried a month on a PPC (Polyenylphosphatidylcholine)/SAMe regimen.
Now, FWIW, my current oral intake list looks like this:
On empty stomach:
Sann Vasoflow (2 pills per day)
ALC (500 mg 2x/day)
After meal:
Pentox (2 per day)
Now Foods Gamma-E Complex (2 per day)
Jarrow PolyPC (1000mg 2x/day)
RxOmega-3 Factors (1x/day)
Based on this account, I am planning to start taking PolyPC soon along with the other supps I have listed above. Additionally, like myrddin, I also use the SANN VasoFlow and Now Foods Gamma-E. But I am convinced that it is the others that are the more active part of the solution.
We wish you the best as you sort through your options.
- George
I have an appointment with Dr. Steven Schlossberg in Norfolk Va. I understand that he works with Dr. Jordan. Do any of the members of this forum know anything about this Doc? Thanks.
NIHs office of rare diseases has announced research funding. Peyronies is considered a rare disease covered by this agency. I have considerable experience with federal grants, but need to hook up with a researcher, foundation, physician, etc.
Any contacts that you can give me would be appreciated.
I would start with Tom Lue in SF. Dr Gonzalez-Cadavid (sp?) in LA is also active in research. Talk to them and see what they would like.
Tim
If you are diagnosed with Peyronie's, should you avoid erections / sexual activity, or should you be as active as possible?
I think the watchword is caution. Erection is good because it brings in oxygenated blood to promote tissue health and healing. However, you don't want to engage in activity that causes bending or any further damage, especially in the active or inflamatory stage. So sex/masturbation is fine - just be gentle and careful.
Nemo
DJW
I agree with Nemo. Do not stop having sex and erections. The penis needs fresh blood daily to keep the corpora's healthy.
After Peronies hit me the night time erections slowly went away. I did not pay much attention and ended up loosing 1.25" in length.
Get a good uro. Have a complete Testesterone and Thyroid check. I had the double whammy of Peronies and low Testesterone (T).
I'm lucky because my curve straighten in about 12-18 months. This was 12 years ago and they have better treatments now. I was on Vitamin E 400IU 3 times a day and Pataba. I continued Vitamin E until October 2006 when I had to have heart stents.
If you start to loose erections or become less firm get a VED to help maintain a healthy penis.
Good Luck. There is tons of help on this board.
Jackp
Quote from: Nemo on February 24, 2008, 12:17:49 AM
I think the watchword is caution. Erection is good because it brings in oxygenated blood to promote tissue health and healing. However, you don't want to engage in activity that causes bending or any further damage, especially in the active or inflamatory stage. So sex/masturbation is fine - just be gentle and careful.
Nemo
Thanks for the replies. This may be a stupid question, but is intercourse considered an act that causes bending?
By the way, it great to be able to talk to other people with the same condition. You don't hear much about it in general.
Quote from: jackp on February 24, 2008, 06:02:22 AM
DJW
I agree with Nemo. Do not stop having sex and erections. The penis needs fresh blood daily to keep the corpora's healthy...I'm lucky because my curve straighten in about 12-18 months[/b]. This was 12 years ago and they have better treatments now. I was on Vitamin E 400IU 3 times a day and Pataba.
Jackp,
Do you mean that your curvature resolved itself after 12-18 months with just Vit E and Potaba? Do you consider yourself completely healed?
DJW, in some cases, intercourse is responsible for Peyronie's in the sense that some guys (myself included) had an "accident" during sex during which the girl came down wrong, or you slipped out and "jammed" it against the pubic bone, or any number of sexual accidents which cause trauma or an acute bend to the penis which tears some tissue inside, causing scaring and then bending (classic Peyronie's). However, some guys get it with no trauma they can recall - it's very mysterious in that sense. My 71 year old Dad woke up with Peyronie's one morning and he hasn't had sex in years (he's diabetic). Some feel it may be genetic for some people, a sort of tissue disorder.
But more directly, no, normal intercourse doesn't cause problems, you just have to be careful of bending, awkward positions that put stress on the penis, or accidents. Bottom line, be careful and talk to your woman about how you need to be careful, and sex shouldn't be a problem. For instance, my girlfriend knows that right now (while I think I am in an inflamation stage) there's no girl on top action allowed.
Good luck,
Nemo
DJW
Yes the curve corrected! Completely Healed -- NO!!!!!
Even though the curve straightened the problem spread to the corpora's. This caused loss of length and ED to the extent that I am now 100% impotent and the only thing that allows me to have sex is a VED with constriction bands.
Yes I tried all the pills, V,C&L. The shots PGE1 (Edex) and trimix. The shots only made things worse. I even tried a drug in Mexico that melts under your tongue (don't remember the name).
It took about 10 years for the ED to become so bad. The last two years been with the VED. I had a failed implant last October because of the scar tissue in the corpora's that caused a puncture of the urethra. Now I am about 3.5 weeks post back surgery and have to wait about another 5 months for a retry with the implant.
Why do I tell you all this? All I recommend is get to a good Uro ASAP. Shrinkage is very sneaky. If you go the VED route ask your Doctor to give you a prescription for one and have the rep fit it for you. Ask OLD MAN for advice on a VED he is the PRO.
I understand that I am one of the lucky ones when it comes to straightening.
Good Luck,
Jackp
Thanks again for the replies, I appreciate it.
DJW:
You asked if having sex (intercourse) with Peyronies Disease would cause bending, etc. Yes and no, safe gentle sex while exhibiting sypmtoms of Peyronies Disease would be all right to do. But, just do not do the woman on top with all the extra hard thrusting and moving about while you are penetrated. Other positions are safe to use, but again use caution and do any action what would put excessive pressure on the penis. Slow, gentle sexual actions can be just as satisfying as the fast violent manuever ones and much safer. A lot of us wish that we had adhered to that many years ago!!!
Old Man.
There has long been concern about Testosterone Replacement Therapy and risks of Prostate cancer. Of course, that begs the question as to why younger people with normal testosterone levels are not at risk for prostate cancer. Researchers are now finding answers to that question and those answers should make all of us sit up and take notice.
1) Researchers have now discovered that Cardiac Peptide Hormones are POWERFUL anti-cancer agents.
2) Researchers also now know that Cardiac Peptide Hormones are POWERFUL stimulators of testosterone (which explains why testosterone, WHEN STIMULATED BY CPHs, is benign EVEN THOUGH it is NOT when stimulated artificially in the absence of those protective CPHs). Incidently, this protective effect likely applies to women in connection with estrogen and would explain why older women are at greater risk of estrogen induced cancers than younger women.
3) Any degree of cardiac impairment is now known to REDUCE levels of Cardiac Peptide Hormones thus driving up not only cardiovascular risk, but also cancer risks. (An exception is outright heart failure which actually raises levels of Cardiac Peptide Hormones).
4) Regular exercise has been shown to RAISE levels of Cardiac Peptide Hormones, thus protecting not only the cardiovascular system, but also from cancer on a systemic basis.
5) Obviously, diet and its impact on maintaining cardiac health and normal levels of CPHs has HUGE importance in avoiding this unfortunate metabolic cascade.
6) ADDITIONALLY, normal levels of CPHs support normal blood pressure levels IN SPITE of things like elevated levels of sodium in the blood stream which would be expected to elevate BP.
This whole field of study is just huge. There is ever increasing research supporting the concept that multiple diet and exercise vectors influence vulnerability to and ability to recover from diseases like Peyronies (and worse). This should indeed be a HUGE wake up call to all of us.
Hello:
I am an attorney representing 3 clients against a urologist for causing Peyronie's disease. In one case my client is a Board Certified Family Practice physician who was held down on the table against his will for 15 minutes while this urologist tortured him with the cysto. There were two other people present to hear the screaming.
One of the other clients is my uncle. He was black and blue in his whole genital area for a month after having a cysto.
I also have a 4th client who is a female - she is now permanently incontinent because of this urologist's refusal to terminate the dilatation when she demanded that it be stopped because of severe pain.
One of this urologist's nurses quit her position because the urologist was hurting so many people. There are at least 17 other men in this rural area who have also had a similar experience with this urologist.
I have found only one urologist who will testify, but he wants $40,000.00 to do so. The others all refuse to testify for social reasons (don't want to offend another doc) or that they don't believe Peyronie's can be caused by a cysto. As noted in my other recent post, there is a substantial amount of recent research showing otherwise. . .
If anyone knows of a urologist who might be willing to spare numerous other men from injury, please let me know.
Robert W. Bright, Esq.
robwbright@yahoo.com
Wow - what a request.
I would suggest going for the assault and battery issue, and throw in the Peyronie's for good measure. All you need to do is show it happened. And that he suffered. You might be able to get someone to testify that the procedure did not go as well as it should have and that he violated standards of care in his behavior. If you could get someone to testify that he HAS Peyronie's, it seems pretty easy to get him to admit that trauma can lead to it. Trauma is the key - it is the lead theory of causation in Peyronies.
I have testified in medical-malpractice cases. I guess it's different for busy surgeons compared to us pediatricians - We agree to work for an hourly wage. Asking for 40 grand up front is disgusting.
Tim
Tim: Thanks. Here'e the problem - by law it's malpractice case regardless of whether it's battery or just the cysto. Between the injured doc and I, we have contacted 15 urologists. Only had success with the $40,000.00 one - and niether of us is paying that much for an opinion (that urologist was also an attorney, so I guess that explains the ridiculous fee. LOL). I raised the insanity of that issue at the West Virginia Supreme Court and they refused to decide that issue.
One thing I am curious about is this: If I frame it as a battery, I don't know whether or not I need a UROLOGIST to testify to a breach of the standard of care. I'm reviewing the requirements in the statute. If not, then I could pretty much use any generalist - especially one who had taken any urology training.
BTW, as a Pediatrician, have you ever done a cystoscopy? If so, would you be willing/interested in testifying?
Thanks
Rob
I take care of lungs, not penises (peni?). I have looked down windpipes, but not up a penis (think I'd keep it that way too).
It really seems that the fact that urologists make a lot of money makes it less imperative that they take legal cases (which are fairly lucrative).
Going to a doc who is far away makes the most sense - even if you have to network with attorneys across the country. I think that the feeling is this: "Yeah, there is a risk of trauma - we know that going in. Bad things happen sometimes, and that is the way it goes - why go after the poor doc who is just trying to help some poor patient?"
Perhaps if you asked someone who had published literature about cystoscopy to do it - but the same feelings may apply. Also, getting someone to simply say that there is a risk, and to see if the doc doing the procedure was aware of the risks, and advised about them specifically. That would be a start.
Finally, I have been more willing to take on pediatric lung cases when the attorney knew up front that I may not say something he liked. IOW, I said I will review what you got, but I am not guaranteeing that you will like what I say to you. If I agree that something bad happened, then we can move forward.
If you did that and had an egregious case (it sounds like you do), then you might get your foot in the door, and then go from there.
Tim
From Spain:
Quote from: PubMed[Internet use in patients attending a hospital urology clinic]
[Article in Spanish]
Santos Arrontes D, García González JI, Martín Muñoz MP, Jiménez Jiménez JI, Paniagua Andrés P.
Servicio de Urología, Hospital de Móstoles, Móstoles, Madrid. dsantosa@gmail.com
HYPOTHESIS: The increase in the awareness of computers in the general population and the spread of Internet as a tool for communication and knowledge, allows patients to have greater understanding of their conditions. OBJECTIVE: To evaluate the use of Internet by the population from a health area and the knowledge extracted about their urological conditions. MATERIAL AND METHODS: This prospective study included all patients of age who attended a hospital urology clinic between 1st September and 31st December 2006, in a health area of 200,000 inhabitants. All patients were given a self-administered questionnaire to complete; medical staff did not intervene in filling it out in any case. The study variables were age (under 30, between 30 and 60 and over 60), sex, patient's pathology (only those with at least 5 cases were assessed), educational level (none, primary school qualification, intermediate studies and university studies), presence of a computer at home (yes/no), knowledge of the existence of internet (yes/no), searches performed on urological conditions and influence of these consultations in their relationship with their doctor. The relationship between the use of internet and the different variables was evaluated using the Kruskall-Wallis test. A probability of the null hypothesis less than 0.05 was considered significant. RESULTS: A total of 1,111 questionnaires were received, of which 1,062 were useful for processing. The mean age was 60.98 with a standard error of 15.08. 18.4% were women. The population distribution by level of studies was: 22.2% uneducated, 43.5% with primary education qualification, 27.5% with intermediate educational level and 6.8% university graduates. 58.4% of patients denied having a computer at home, 37.7% do not know what internet is, 76.7% do not have an e-mail address and just 6.7% visit medical pages, although only 1.5% admit having asked their doctor about information received on internet. According to classification by age, patients under 30 have significantly greater knowledge of computers and internet (p<0.001). However, there were no significant differences shown between the age and the fact of asking about information received through internet (p=0.1). The most visited web pages were, in order of the most to least visited: tuotromedico.com, varicocele.com, aecc.es, wikipedia.com, prostatitis.org, ondasalud.com and mapfrecajasalud.com. The most searched for conditions were: chronic prostatitis (25% of patients affected), testicular cancer (20% of patients), varicocele (18.7%), Peyronie's disease or congenital penile curvature (18.1%) and stenosis of the pyeloureteral junction (16.6%). CONCLUSIONS: --The exploitation of the internet as an information tool on the part of patients is very low, due to the characteristics inherent to our population, such as the low level of studies. --Urological web pages should dedicate an extensive part to the most common conditions in the younger population groups, such as varicocele or prostatitis. However, it is logical to expect that these epidemiological patterns will modify with time. --The use of internet and computers in general should be promoted among the different population groups in the health area under study.
PMID: 18314655 [PubMed - in process]
Here is an interesting abstract of a paper outlining current Peyronies treatments and their perceived efficacy:
Quote from: PubMedPharmacological Management of Peyronie's Disease.
Trost LW, Gur S, Hellstrom WJ.
Department of Urology, Tulane Health Sciences Center, New Orleans, Louisiana 70112, USA.
Peyronie's disease is a localised, fibrosing condition of the penis that occurs in up to 9% of men. Although its aetiology has not been elucidated, Peyronie's disease probably results from the presence of a predisposing genetic susceptibility combined with an inciting event, most probably trauma. Following appropriate clinical evaluation, initial treatment consists of a trial of oral and/or intralesional pharmacotherapy. Oral therapies most commonly employed include para-aminobenzoate (Potaba) and tocopherol (vitamin E), with colchicine, tamoxifen, propoleum and acetyl-L-carnitine being used less frequently. Placebo-controlled studies examining these agents have failed to show a consistent beneficial effect on Peyronie's disease, with the exception of para-aminobenzoate, which may decrease plaque size and curvature, and acetyl-L-carnitine, which may reduce erectile pain and inhibit disease progression. Intralesional injection therapy for Peyronie's disease is commonly used as a first-line therapy along with oral medications. The current standard of care involves injection with interferon-alpha-2a or -2b, verapamil or collagenase over 2-week intervals for a period of 5-6 months. Interferon-alpha-2b, in particular, has been documented in a large, multicentre, placebo-controlled study to be significantly more effective than placebo in decreasing penile curvature, plaque size, penile pain and plaque density. However, interferon treatment is also associated with significant adverse effects, including fever and other flu-like symptoms. Other available therapies that have not consistently shown efficacy in placebo-controlled studies include corticosteroids and orgotein. Surgery is considered in patients with Peyronie's disease who have not responded to a trial of conservative medical therapy for 1 year and who are precluded from sexual intercourse. Procedures commonly performed include the Nesbit procedure (or variations of the Nesbit), penile plaque incision/excision with or without grafting, and implantation of a penile prosthesis. Further basic scientific research in Peyronie's disease is likely to identify additional targets for future pharmacotherapy.
PMID: 17352513 [PubMed - indexed for MEDLINE]
Hi,
I found this fascinating article about regeneration of body parts and the potential for humans to do so in the near future (10-15 years). Equally as fascinating is a discussion about the role fibroblasts play in the healing/scarring process.
I recommend anyone with an interest in these topics check out the article... I am sure I am not doing it justice.
http://www.sciam.com/article.cfm?id=regrowing-human-limbs&print=true
Very interesting article!
Thanks for the link.
Hi Guys.
After my first Uro visit eight months ago I immediately started taking vitamin E, as it was the only thing besides surgery suggested. Then when I found the PDS web site a few months back, and began my real education, I started taking ALC, and eating better. Now, in addition to these supplements, and various life changes, I'm doing traction, and the vacume.
In the event When, (I'm determined to remain optomistic here) I start seeing improvement, and can make an account there of on this topic...which treatment worked?
Playing devils advocate here, but really, how do we know if it was the VED, or the traction, or the oral treatments, injections, etc., etc.?
There's not a lot of "control" going on around here...
AR
This is an interesting article which seems to indicate that vascular plaque "eats" and depletes nitric oxide. IF the same process takes place in the case of Peyronies, it would seem to explain a lot of things. Perhaps Arginase is not the ONLY issue concerning NO depletion?
Quote from: HealthDayThe finding, scheduled to be presented this week at the American Chemical Society annual meeting, in New Orleans, centers around the availability of nitric oxide (NO), an important gas within the body that relaxes blood vessel walls and helps prevent atherosclerosis. Certain substances in plaque remove NO and create a toxic substance known as peroxynitrite, which hampers the function of enzymes necessary to the health of blood vessel walls.
Atherosclerosis May Also Harm Vital Organs Toxic byproduct of plaque formation wreaks havoc on heart, lungs and liver, study suggests (http://www.healthday.com/Article.asp?AID=614324)
I'm not sure how this could help us. Any comments appreciated.
Latent TGF- and its intricate activation process
TGF- is synthesized as a prohormone that is cleaved in the secretory pathway into an amino-terminal propeptide and a carboxy-terminal fragment that constitutes the mature growth factor (Fig. 4). Unlike most other hormones, the mature TGF- remains noncovalently associated with its propeptide after secretion (for review, see Roberts and Sporn 1990). Mature TGF- in this complex is not recognized by the signaling receptors; hence, the term latency-associated protein (LAP) designates the TGF- propeptide. A family of large secretory glycoproteins known as latent TGF--binding proteins (LTBPs) covalently bind to LAP via disulfide bonds. LTBPs are not required for maintenance of TGF- latency but may instead facilitate the secretion, storage, or activation of the TGF--LAP complex.
The physiological activation process of latent TGF- is currently understood only in part, but it seems clear that this is a multistep process. Many different components including the plasminogen activation cascade, thrombospondin, and the mannose 6-phosphate receptor have been suggested to be involved in this process (Taipale et al. 1994; Nunes et al. 1997; Rifkin et al. 1997), but recent genetic evidence points at thrombospondin-1 (TSP-1) and the cell adhesion receptor v6 integrin as important participants in this process in vivo. TSP-1, a large homotrimeric protein secreted by many cell types, can activate latent TGF- in vitro through a conformational modification of LAP and appears to be responsible for a significant proportion of the activation of TGF-1 in vivo (Crawford et al. 1998). TGF-1 null mice phenocopy TSP-1 null mice, and systemic treatment with a peptide that blocks TGF-1 activation by TSP-1 causes lung and pancreas alterations similar to those of TGF-1 null animals. A TSP-1 peptide that activates latent TGF-1 reverses these lung and pancreatic abnormalities. In separate studies, the TGF-1-LAP complex has been shown to be a ligand for the integrin v6. v6-expressing cells may induce spatially restricted activation of TGF-1, providing an explanation for the propensity to inflammation in mice lacking this integrin (Munger et al. 1999). A different type of protease, matrix metalloproteinase-2 and -9, which are implicated in tumor invasion and angiogenesis as cell surface-bound proteases, have also been shown to activate latent TGF- (Yu and Stamenkovic 2000).
Activin control by Follistatin
Activin was originally identified as an inducer of follicle-stimulating hormone (FSH) from the pituitary and has a central role in the regulation of the reproductive axis (Gaddy-Kurten et al. 1995). Follistatin is a soluble secreted glycoprotein that suppresses the release of FSH by binding to Activin and inhibiting its interaction with Activin receptors (de Winter et al. 1996). Follistatin can also bind to BMPs, with similar effects (Iemura et al. 1998) and has been shown to induce neural tissue in Xenopus embryonic explants, probably by blocking BMP activity (Hemmati-Brivanlou et al. 1994). As many of the other TGF- family-binding proteins discussed below, Follistatin contains cysteine-rich modules of a type also found in osteonectin, agrin, and other extracellular matrix glycoproteins. These modules may constitute growth factor-binding regions (Fig. 4).
The importance of Follistatin in modulating Activin activity is evident in follistatin-deficient mice, which exhibit abnormal whisker and tooth development and hard-palate defects (Matzuk et al. 1995b). Defects in development of these organs were also observed in Activin A-deficient mice (Matzuk et al. 1995a). follistatin-deficient mice also have defects that are not observed in Activin mutant mice, consistent with a role for Follistatin in regulating other factors. Follistatin is produced and localized to prostate tissue from men with high grade cancer, where it has been proposed to bind to autocrine Activin and inhibit its antiproliferative activity (McPherson et al. 1999).
http://www.caspases.org/showcitationlist.php?chem=Transforming%20Growth%20Factor%20beta (http://www.caspases.org/showcitationlist.php?chem=Transforming%20Growth%20Factor%20beta)
I'm not sure where else to post this..... Is there any area on this forum where you post your "own" situation and condition? I see in many of the threads requests for "tell us about your condition". I didn't know if there was a particular part of the forum to do this. I'm happy to share my experience, but sounds like mine may be similar to many of you.
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=370713 (http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=370713)
The suppression of collagen production by increasing the cyclic (c) AMP content of cultured cells was examined vis-à-vis the β-adrenergic system. Cultured human fetal lung fibroblasts incubated for 6 h with the β-agonists isoproterenol or epinephrine produced ~30% less collagen per cell than in the absence of the hormones. To demonstrate that the β-agonists were operating by their interaction with the β-receptor to stimulate adenylate cyclase to increase the intracellular content of cAMP, d- and l-isoproterenol were incubated separately with the cultured cells. Only l-isoproterenol increased intracellular cAMP and decreased collagen production. While 20 nM l-isoproterenol was effective, the d-isomer was ineffective even at 2μM. An increase in cAMP from 40 to 73 pmol/mg protein was effective in suppressing collagen production; increasing the cAMP content to much higher levels had little additional effect on collagen production. 3-Isobutyl-1-methylxanthine, an analog of theophylline that inhibits phosphodiesterase, potentiated the effect of isoproterenol in suppressing collagen production. Further support for the concept that isoproterenol suppressed collagen production by acting through the β-receptor was provided by the finding that only the l-isomer of propranolol, a β-blocker, was effective in blocking both the increase in intracellular cAMP and the suppression of collagen production caused by isoproterenol. These results demonstrate that collagen production in human fibroblasts can be regulated by the β-adrenergic system and indicate that when the cAMP content is increased beyond a threshold value, collagen production is suppressed. Since collagen production is sensitive to the small changes of cAMP content of cells brought about by β-stimulation in cultured cells, the results point to a possibly important mechanism for the regulation of collagen production in the body.
see link at top for full published report
Wednesday, April 16, 7:00 p.m EST Live with Dr. Culley Carson, peyronies expert
« Reply #450 on: Yesterday at 10:39:41 PM » Quote Modify Remove
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http://www.businesswire.com/portal/site/google/?ndmViewId=news_view&newsId=20080413005027&newsLang=en
Wednesday April 16, 2008
World-Renowned Peyronie's Disease Specialist, Dr. Culley Carson to Discuss the Signs, Symptoms and Latest Treatment Options for Peyronie's Disease in Online Forum at Menshealthpd.com
Physicians and Patients Encouraged to Join Peyronie's Disease Live Online Chat
BLOOMINGTON, Ind.--(BUSINESS WIRE)--Physicians and patients around the world are invited to a live, online chat event entitled, "Early Stage Treatment of Peyronie's Disease: Options, Expectations and Likely Outcomes" at www.MensHealthPD.com on Wednesday, April 16 at 7:00 p.m. EST led by Dr. Culley Carson, an expert in the treatment of Peyronie's. Recent demographic surveys have reported that Peyronie's disease, also known as penile curvature, can be found in up to nine percent of men between the ages of 40 and 70.1
During the session, men and their partners as well as physicians can ask Dr. Carson specific questions surrounding the signs, symptoms and progression of Peyronie's disease. Dr. Carson is expected to also highlight the common options for treatment and their potential outcomes. People who wish to participate in the chat are encouraged to post questions in advance at www.MensHealthPD.com.
What:
Live Chat: "Early Stage Treatment of Peyronie's Disease: Options, Expectations and Likely Outcomes."
Who:
Dr. Culley Carson, Professor and Chief, Division of Urology, University of North Carolina School of Medicine, Chapel Hill
Where:
www.MensHealthPD.com
When:
Wednesday, April 16 at 7:00 p.m. EST (4:00 p.m. PST, 12:00 p.m. GMT)
Dr. Carson is the Rhodes Distinguished Professor of Urology and Chief of Urology at the University of North Carolina Hospital, Chapel Hill, as well as Associate Chairman of the Department of Surgery at North Carolina School of Medicine, Chapel Hill. Previously, he served as a Director of the Duke Male Sexual Dysfunction Clinic, and is the Consulting Urologist at several North Carolina hospitals. He has published more than 200 peer review articles and eight textbooks.
"I am excited to lead the live discussion on MensHealthPD.com. The site provides a welcoming community and a unique outlet for both patients and physicians to share their experiences with Peyronie's disease," said Dr. Carson. "For patients, conditions such as erectile dysfunction and Peyronie's can be embarrassing and uncomfortable subjects to discuss. The live chat is a perfect opportunity for them to become better educated on this medical condition and learn about the treatment options available in a discreet environment. Physicians may also gain a better understanding of the questions and thoughts that patients and partners have about the disease."
Launched in February 2008, www.MensHealthPD.com, is owned and maintained by Cook Medical and is designed to provide the latest information on Peyronie's disease. The interactive site offers medical professionals, patients and their partners public and physician forums for discussing Peyronie's disease, posting questions and sharing personal experiences about the condition.
About Peyronie's Disease:
The disease is linked to erectile dysfunction in 20 to 40 percent of the sufferers and is characterized by the formation of a plague or hardened scar tissue beneath the skin of a man's penis. The scarring is non-cancerous and may lead to a painful erection and curvature of the penis during erection.
The modulation of apoptosis by cyclic AMP involves Akt and epidermal growth factor receptor.
http://www.ncbi.nlm.nih.gov/pubmed/15833279?dopt=Abstract (http://www.ncbi.nlm.nih.gov/pubmed/15833279?dopt=Abstract)
Zhou B, Li F, Chen H, Song J.
Laboratory of molecular Cell Biology, Institute of Biochemistry and Cell Biology, Shanghai Institutes for Biological Sciences, Chinese Academy of Sciences, 32 Yue-Yang Road, Shanghai 200031, PR China.
Adenosine 3',5'-cyclic monophosphate (cAMP) and transforming growth factor-beta are important regulators of many biological processes. In this study we investigated the effect and its potential mechanism of cAMP on transforming growth factor-beta1- and serum deprivation-induced apoptosis in Mv1Lu cells. Transforming growth factor-beta1 treatment or serum deprivation induces apoptotic response in Mv1Lu cells. Forskolin, a cAMP-elevating agent, or 8-Bromo-cAMP (8-B-cAMP), a cell permeable cAMP analogue, inhibited the cell proliferation and markedly enhanced apoptosis induced by transforming growth factor-beta1, but completely suppressed serum deprivation-induced apoptosis. Furthermore, forskolin decreased the Akt phosphorylation, and the inhibition of phosphatidylinositol-3 kinase by LY294002 sensitized Mv1Lu cells to transforming growth factor-beta1-induced apoptosis. In addition, forskolin treatment induced tyrosine phosphorylation of epidermal growth factor receptor. Inhibition of epidermal growth factor receptor by specific inhibitor PD153035 blocked the cAMP-mediated suppression of serum deprivation-induced apoptosis. The results indicate that cAMP exerts its opposite effects in transforming growth factor-beta1- and serum deprivation-induced apoptosis via a mechanism involving the modulation of signaling components of phosphatidylinositol-3-kinase/Akt and epidermal growth factor receptor in Mv1Lu cells.
Is this paper saying that cAMP can slow TGF Beta?
jxyz
Quote from: lwillisjr on April 14, 2008, 10:32:06 PM
I'm not sure where else to post this..... Is there any area on this forum where you post your "own" situation and condition? I see in many of the threads requests for "tell us about your condition". I didn't know if there was a particular part of the forum to do this. I'm happy to share my experience, but sounds like mine may be similar to many of you.
Yes there is a place to tell your story. Use this thread: Our Histories - Meet the Forum Members, Read our Stories. You can post your story there one time, then you can go back and modify it as your story develops.
Guys, I think you need to think carefully on this Collagen issue. The problem is NOT over production of Collagen. The problem is the accumulation of DEFECTIVE Collagen. What we want to accomplish here is NOT to stop Collagen production. What we want to do rather is to get rid of the DEFECTIVE Collagen and replace it with normal Collagen and that is going to take, if anything, an increase in Collagen production. AND, of course, we need to stop the new Collagen from going bad. - George
Quote from: jxyz on April 16, 2008, 12:15:11 PM
The modulation of apoptosis by cyclic AMP involves Akt and epidermal growth factor receptor.
http://www.ncbi.nlm.nih.gov/pubmed/15833279?dopt=Abstract (http://www.ncbi.nlm.nih.gov/pubmed/15833279?dopt=Abstract)
Zhou B, Li F, Chen H, Song J.
Laboratory of molecular Cell Biology, Institute of Biochemistry and Cell Biology, Shanghai Institutes for Biological Sciences, Chinese Academy of Sciences, 32 Yue-Yang Road, Shanghai 200031, PR China.
Adenosine 3',5'-cyclic monophosphate (cAMP) and transforming growth factor-beta are important regulators of many biological processes. In this study we investigated the effect and its potential mechanism of cAMP on transforming growth factor-beta1- and serum deprivation-induced apoptosis in Mv1Lu cells. Transforming growth factor-beta1 treatment or serum deprivation induces apoptotic response in Mv1Lu cells. Forskolin, a cAMP-elevating agent, or 8-Bromo-cAMP (8-B-cAMP), a cell permeable cAMP analogue, inhibited the cell proliferation and markedly enhanced apoptosis induced by transforming growth factor-beta1, but completely suppressed serum deprivation-induced apoptosis. Furthermore, forskolin decreased the Akt phosphorylation, and the inhibition of phosphatidylinositol-3 kinase by LY294002 sensitized Mv1Lu cells to transforming growth factor-beta1-induced apoptosis. In addition, forskolin treatment induced tyrosine phosphorylation of epidermal growth factor receptor. Inhibition of epidermal growth factor receptor by specific inhibitor PD153035 blocked the cAMP-mediated suppression of serum deprivation-induced apoptosis. The results indicate that cAMP exerts its opposite effects in transforming growth factor-beta1- and serum deprivation-induced apoptosis via a mechanism involving the modulation of signaling components of phosphatidylinositol-3-kinase/Akt and epidermal growth factor receptor in Mv1Lu cells.
Is this paper saying that cAMP can slow TGF Beta?
jxyz
Can someone comment on this post. I believe this to be important information.
Quote from: George999 on August 12, 2007, 06:48:03 PM
I just ran across the following information on elastin.
1) While elastin production in the body declines precipitously at puberty, it does not cease altogether.
2) Elastin is important because it adds elasticity to tissue. One of the effects of Peyronies is to reduce and/or eliminate the amount of elastin in affected tissues.
3) The biological switch for elastin production is cAMP/cGMP ratio. Increase in cAMP shuts down elastin production (bad). Increase in cGMP ramps up elastin production (good).
4) Both Icariin (Horny Goat Weed) and Viagra increase cGMP which is good news in terms of elastin.
5) Forskolin increases cAMP levels which means that forskolin with all of its potential benefits may not be good for elastin production.
6) Since reducing levels of cAMP can lead to increased inflammation, this is probably not a solution, rather the target would need to be increasing cGMP levels IN PROPORTION to cAMP levels.
- George
PS - This post has been modified by me due to an error in my initial post. Icariin actually increases cAMP and decreases cGMP selectively in cancer cells meaning that it may have benefits in fighting cancer. I originally misinterpreted this as indicating that icariin might be bad for elastin production.
George, if I understand your post correctly you are saying "cAMP increase is bad."
According to this abstract Pentox increases cAMP. In essence you are saying Pentox is bad. Or the abstract is wrong. What's up?
Here is the abstract:
"Inducible nitric oxide synthase (iNOS) is expressed in both the fibrotic plaque of Peyronie's disease (Peyronies Disease) in the human, and in the Peyronies Disease-like plaque elicited by injection of TGFβ1 into the penile tunica albuginea (TA) of the rat. Long-term inhibition of iNOS activity, presumably by blocking nitric oxide (NO)- and cGMP-mediated effects triggered by iNOS expression, exacerbates tissue fibrosis through an increase in: (a) collagen synthesis, (b) levels of reactive oxygen species (ROS), and (c) the differentiation of fibroblasts into myofibroblasts. We have now investigated whether: (a) phosphodiesterase (PDE) isoforms, that regulate the interplay of cGMP and cAMP pathways, are expressed in both the human and rat TA; and (b) -arginine, that stimulates NOS activity and hence NO synthesis, and PDE inhibitors, that increase the levels of cGMP and/or cAMP, can inhibit collagen synthesis and induce fibroblast/myofibroblast apoptosis, thus acting as antifibrotic agents. We have found by immunohistochemistry, RT/PCR, and Western blot that PDE5A-3 and PDE4A, B, and D variants are indeed expressed in human and rat normal TA and Peyronies Disease plaque tissue, as well as in their respective fibroblast cultures. As expected, in the Peyronies Disease fibroblast cultures, pentoxifylline (non-specific cAMP-PDE inhibitor) increased cAMP levels without affecting cGMP levels, whereas sildenafil (PDE5A inhibitor) raised cGMP levels. Both agents and -arginine reduced the expression of collagen I (but not collagen III) and the myofibroblast marker, α-smooth muscle actin, as determined by immunocytochemistry and quantitative image analysis. These effects were mimicked by incubation with 8-Br-cGMP, which in addition increased apoptosis, as measured by TUNEL. When -arginine (2.25 g/kg/day), pentoxifylline (10 mg/kg/day), or sildenafil (10 mg/kg/day) was given individually in the drinking water for 45 days to rats with a Peyronies Disease-like plaque induced by TGF β1, each treatment resulted in a 80–95% reduction in both plaque size and in the collagen/fibroblast ratio, as determined by Masson trichrome staining. Both sildenafil and pentoxiphylline stimulated fibroblast apoptosis within the TA. Our results support the hypothesis that the increase in NO and/or cGMP/cAMP levels by long-term administration of nitrergic agents or inhibitors of PDE, may be effective in reversing the fibrosis of Peyronies Disease, and more speculatively, other fibrotic conditions."
What got my attention, and which goes to the heart of what many of us dream of, was addressed in their discussion of the results:
"In summary, we propose that pharmacological interventions aimed at elevating NO, cGMP, or PKG levels, and possibly cAMP, in the penis are potentially useful for the treatment of Peyronies Disease, and more speculatively, for other fibrotic conditions. This work has not addressed the question on whether this intervention would induce regression of an already well-formed plaque, but comparison of multiple gene expression profiles in human Peyronies Disease and the related Dupuytren's disease suggests that both conditions are in a dynamic cell and protein turnover involving replication, differentiation, apoptosis, and collagen and extracellular matrix synthesis and breakdown [8, 9 and 10]. Therefore, modulation of any of these processes may eventually involute the plaque, as has been observed in generalized fibrotic conditions [68 and 69]."
FYI, those last two references are:
68. H.S. Lee, G.T. Huang, L.H. Miau, L.L. Chiou, C.H. Chen and J.C. Sheu, Expression of matrix metalloproteinases in spontaneous regression of liver fibrosis. Hepatogastroenterology 48 (2001), pp. 1114–1117.
69. T. Lai, J.T. Fallon, J. Liu, J. Mangion, L. Gillam, D. Waters and C. Chen, Reversibility and pathohistological basis of left ventricular remodeling in hibernating myocardium. Cardiovasc. Pathol. 9 (2000), pp. 323–335.
One final note for those who grow impatient with a lack of obvious results: The single case report on pentox leading to improvement (written by Dr Liu) showed improvement in a man with long standing lesions after TWO YEARS of treatment. Patience is a virtue...
jxyz, I think the answer to your question goes something like this. Life is, in many ways, a trade off. Most things that are beneficial also have a "dark side". In the case of Pentox, it provides known anti-fibrotic benefits. While doing this, it may negatively affect elastin turnover. Thats a tradeoff. But until anything better than Pentox is found, it may be a worthwhile tradeoff. In the case of Forskolin, it has shown no evidence thus far of being beneficial in the case of Peyronies. Thus, it would probably NOT be worth the trade off. However, even Forskolin was worth the tradeoff for me. I was having very difficult to treat urinary tract infections. Forskolin helped greatly in resolving that problem through its effect as a smooth muscle relaxant. Through the many months I was taking it, whatever negative effect it had on my Peyronies was imperceptible. However, its benefit in terms of UTI's was VERY perceptible. Now my UTI problem is solved and I am off the Forskolin, but if the UTI problem recurred, I would be back on the Forskolin without batting an eyelash. So the lesson is that it is good and important to know these details, but then one has to step back and weight the risk to benefit equation as carefully as possible. It is all to easy to be overly cautious and sustain a net loss as a result. Bottom line: Pentox is a good drug for Peyronies and I still highly recommend it. - George
I never read this thread, so I hope there's a better place a mod could move this to. I just want to say, there's a good salon article on peyronie's. Here is a link to some of the response letters.
I found particularly interesting that one reader said sex every other day helped him. This seems to go along with my experience perhaps.
http://letters.salon.com/mwt/feature/2007/09/28/crooked_penis/view/index3.html?show=all
Sweeper:
Welcome to the Peyronies Disease forum. Sorry to hear that you have joined the Peyronies Disease club though. Your history sounds just like a lot of us on here. Some sort of injury caused this horrible mess to start.
Word of advice for you though. Don't wait any longer to seek good professional help. Self medicating in this case does not always work well. Getting some treatment started early on in Peyronies is the best approach. When seeing a urologist try your best to get one that has experience in treating Peyronies. There are not a lot of them around, but some are very good at what they do.
Read everything you can on this forum. There is more good information on Peyronies Disease here than there is in the uro field. We have been through the fire and know works and what does not. Most uros do not have this background. So, bottom line, do your homework and you will be years ahead in helping yourself.
All of us here are in the same boat and we help each other. Just ask any and all questions you might have and there will be someone who can help you.
Best to you, Old Man
THE USER "shhww3" IS USER IS BANNED FOR SPAMMING OUR FORUM
Hawk
Looking for ways to cut back on systemic inflammation? Here are some tips:
DrWeil.com (http://www.drweil.com/drw/u/QAA400243/Cooking-to-Fight-Inflammation.html)
Quote from: DrWeil.comAGEs give food appetizing tastes and smells but in the body have been linked to inflammation, insulin resistance, diabetes, vascular and kidney disease and Alzheimer's disease. ... The blood tests showed that people age 65 and older had AGE levels 35 percent higher than those in the younger group, and that the greater the consumption of foods high in AGEs, the higher the levels of CRP and other markers of inflammation. They also found that in some cases, AGEs levels were very high in some members of the younger group. Here, too, the higher the levels of AGEs, the higher the CRP and other inflammatory markers.
I think I get what just happened...
Schwing posted a troll post here and it was modified by Hawk to read that he was banned - I could not figure out why it was posted with his shings name to it.
Tim
I was wondering if the type of shrinkage that happens to people who have Peyronies Disease is the same as other types of shrinkage? I do not have detectable fibrosis anywhere, but I have lost 3 cm at least due to an injury I guess. It is almost as if the tissues have been remodeled or restructured or something.
I was just wondering whether anyone had any idea whether the ved therapy would work for this particular type of shrinkage, or is there no difference b/w the shrinkage caused by classic Peyronies Disease and other types? Thanks.
josethby:
Based on my experience with VED therapy for ED as well as Peyronies Disease, I would say that VED therapy would help with any type of shrinkage. It should help whether or not the shrinkage is caused by Peyronies Disease symptoms or by just sexual inactivity. There is an old saw that says: "If you don use it, you lose it." and I have found that to be true in my personal case. After prostate cancer surgery that left me totally impotent, I had no sexual activity for several months and my penis shrunk to almost nothing is size. So my conclusin is that the VED therapy can and will help with most cases, etc.
Old Man
Fred, I would recommend that you read this article:
http://www.asiaandro.com/1008-682X/10/79.htm
It has some good information in it that you might find useful.
crazybrab:
Thanks for your post and welcome to the forum!
I was curious, why do you think the specialists told you VED is a "no go area" and instead wanted to try the shockwave therapy?
Also, when you say it had straightened out again after massaging, do you roughly know what sort of angle improvement that translated into?
wayne999,
Straightening of about 40 degrees, down to about 5-10 degrees. I attribute this purely to regular massaging with cocoa butter/vit E, and subsequent stretching of 'softened' tissue during masturbatory sessions.
Shockwave therapy is one of the few peyronies treatments offered by the National Health Service in the UK, so I might just as well give it a try. As it has been endorsed by the NICE (National Institute for Clinical Excellence) here in the UK, previous clinical trials would have produced statistically positive and significant results. Hopefully, it will help me too!
BTW, great forum, great people, keep up the good work everyone!
BENT 70 - pentox's equivalent is called TRENTAL 400 and you can get it in Aust - which Uro are you going to as mine in Oz prescribed trental to me..
Hello everybody..
I have got one simple question....I had really been into swimming before the onset of my fibrosis...and since that, I avoid it a little bit, because I am not sure if it's good for the condition. Now, because of my back and neck problems and also as a regular excersie, I would like to start to swim again. So what do you think about a cold water (in a poll) regarding this condition ? Thanks for replies.
R3
IMHO... you shouldn't let this disease slow you down. I don't think the "cold water" during your swimming would have any effect.
Hi, This is my first post; I am 44yr old in the U.K. and have this curve to the left between 30-40 degrees for as long as I can remember (its almost a banana shape). I saw a Uro who offered surgery about 5 yrs ago. There is no pain during sex ( just to say lately after sex in the middle of night I find myself waking up with an erection which can be quite painful and quite rigid!!). 6 months ago I had blood in my sperm. This was due to uncomfortable sex position so I went to see a different Uro as I still wasn't sure if it was Peyronies. Upon checking he found no bumps or lumps and put it down to Cong. curve. However the curve did increase by about 5-10 degrees after the sperm in blood incident. Again I was told by this Uro the curve wasnt bad enough to go for Surgery but could have it done if I chose to. I am left with worry if this could get worse and what options are there other than Surgery? Is Pentox or Traction any good? The Uro in the U.K. hasn't heard of Pentox before and says the only option is surgery. Thanks.
godzilla uk
Before you opt for surgery try the VED. If it is peyronies it will help if cong. may not but worth the try. Go to the VED section and chat with Old Man. I did and regained almost half of shrinkage due to peyronies before implant surgery.
I had blood in my sperm a while back. Went to the doctor he did an exam and said everything was OK. Said that it happens sometimes especially if we put a lot of pressure on the prostate like on a bike. (Stay off Bikes without the proper support.)
I was just wondering if your curve is cong. why did he want to operate?
Jackp
Godzilla U.K.
Typical treatments for congenital curve are either traction or the VED. It is my understanding that congential curvature is more difficult to treat, but is worth trying. I don't know of any drugs that will help congential curve since there isn't any plaque or fibrous tissue to try to attack. So traction or VED may be your only options.
Surgery can be an option in cases of extreme congential curvature. But from what you describe you have a "mild" curve and no problems with intercourse. I would not recommend the surgery if you are not having any other problems.
My husband has had this condition for over a year..His Penis looked like a fish hook.. We bought a Vacuumed tube pump with gage , that claims to enlarge the penis.. Only after 2 week, he has just about lost the hook.. And has regained about 1/3 of his girth and length back.. Were really excited about this.. Best 100 dollars we ever spent..
The first article out of Gonzalez-Cadavid's lab in LA is the most interesting to me. The other is bogus retrspective data mining on radiologic therapy.
Tim
##################################
Cantini LP. Ferrini MG. Vernet D. Magee TR. Qian A. Gelfand RA. Rajfer J. Gonzalez-Cadavid NF.
Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, Urology Research Laboratory, Los Angeles, CA, USA.
Profibrotic role of myostatin in Peyronie's disease.
Journal of Sexual Medicine. 5(7):1607-22, 2008 Jul.
INTRODUCTION: The primary histologic finding in many urologic disorders, including Peyronie's disease (Peyronies Disease), is fibrosis, mainly mediated by the transforming growth factor beta1 (TGFbeta1). AIM: To determine whether another member of the TGFbeta family, myostatin, (i) is expressed in the human Peyronies Disease plaque and normal tunica albuginea (TA), their cell cultures, and the TGFbeta1-induced Peyronies Disease lesion in the rat model; (ii) is responsible for myofibroblast generation, collagen deposition, and plaque formation; and (iii) mediates the profibrotic effects of TGFbeta1 in Peyronies Disease.
METHODS: Human TA and Peyronies Disease tissue sections, and cell cultures from both tissues incubated with myostatin and TGFbeta1 were subjected to immunocytochemistry for myostatin and alpha-smooth muscle actin (ASMA). The cells were assayed by western blot, Real time-Polymerase chain reaction (RT-PCR), and ribonuclease protection. Myostatin cDNA and shRNA were injected, with or without TGFbeta1, in the rat penile TA, and plaque size was estimated by Masson.
MAIN OUTCOME MEASURES: Myostatin expression in the human TA, the Peyronies Disease plaque, and their cell cultures, and myostatin effects on the Peyronies Disease-like plaque in the rat.
RESULTS: A threefold overexpression of myostatin was found in the Peyronies Disease plaque as compared with the TA. In Peyronies Disease cells, myostatin expression was mainly in the myofibroblasts, and in the TA cells, it increased upon passage paralleling myofibroblast differentiation and was up-regulated by TGFbeta1. Myostatin or its cDNA construct increased the myofibroblast number and collagen in TA cells. Myostatin was detected in the TGFbeta1-induced Peyronies Disease-like plaque of the rat partly in the myofibroblasts, and in the TA. Myostatin cDNA injected in the TA induced a plaque and intensified the TGFbeta1 lesion, which was not reduced by myostatin shRNA.
CONCLUSIONS: Myostatin is overexpressed in the Peyronies Disease plaque, partly because of myofibroblast generation. Although myostatin induces a plaque in the rat TA, it does not appear to mediate the one triggered by TGFbeta1, thus suggesting that both proteins act concurrently and that therapy should target their common downstream effectors.
Musitelli S. Bossi M. Jallous H.
University of Pavia-Andrology and Sexology, School of Urology, Pavia, Italy. sergiomusitelli@libero.it
A brief historical survey of "Peyronie's disease".
Journal of Sexual Medicine. 5(7):1737-46, 2008 Jul.
INTRODUCTION: Historians of medicine and urology, sexology, and andrology in particular maintain that many other physicians, surgeons, anatomists, and pathologists have already described "Peyronie's disease" some centuries before the author after whom it has been called, Francois Gigot de La Peyronie (1678-1747).
AIM: To perform a brief historical survey of Peyronie's disease.
Methods. A literature review was performed.
RESULTS: The main surgeons and anatomists who previously observed and described penile curvature prior to Francois Gigot de La Peyronie are Theodoricus Borgognoni (1205-1298), Guilielmus of Saliceto (circa 1210-1276), Gabriele Falloppio (or Falloppia) (1523-1562), Andreas Vesalius (1514-1564), Giulio Cesare Aranzi (or Aranzio) (1530-1589), Claas Pieterzoon Tulp (Nicholaus Tulpius) (1593-1674), and Anton Frederik Ruysch (1638-1731), who was said to have left the first "postmortem" illustration of the disease in a copperplate engraving in 1691.
CONCLUSION: The original texts could easily prove that none of the alleged "precursors" of La Peyronie did ever describe, treat, and cure real cases of Peyronie's disease, and that to award them this merit was somewhat far-fetched, with only Guilielmus of Saliceto and Falloppio possibly excepted.
Incrocci L. Hop WC. Seegenschmiedt HM.
Department of Radiation Oncology, Erasmus MC-Daniel den Hoed Cancer Center, Rotterdam, The Netherlands. L.Incrocci@erasmusmc.nl
Radiotherapy for Peyronie's Disease: a European survey.
Acta Oncologica. 47(6):1110-2, 2008.
BACKGROUND AND PURPOSE: Peyronie's Disease (Peyronies Disease) is a benign condition characterized by penile nodules, pain and curvature. Radiotherapy has been used for many years with positive outcomes, however all studies published were non-randomized or non-controlled. The purpose of this survey was to understand which treatment policy is followed in Europe before setting up a randomized trial.
MATERIALS AND METHODS: A questionnaire was sent out to 908 European radiotherapy institutions, 402 questionnaires were sent back and filled out correctly (44.5%). The questionnaire consisted of different items, regarding number of patients referred, fraction dose, total dose and technique used, and eventually treatment outcome of clinical trials.
RESULTS: Seventy-three institutions irradiate Peyronies Disease (19%), 304 do not (81%). Reasons for not treating were
insufficient referrals from urologists or no interest in treating benign diseases. The most common fraction dose is 2 (range 0.5-8) Gy and the total radiation dose 20 (range 3-30) Gy. Most of the institutions use electrons (n = 44) or orthovoltage (n = 32). Decreased pain is reported in about 80% of the cases, and side effects by eight institutions.
CONCLUSIONS: So far, a large variation of treatment schedules for radiotherapy of Peyronies Disease has been detected in European countries. Although the results are good and side effects minimal, there is still a need to set up a European randomized trial to prospectively evaluate the efficacy of radiotherapy for Peyronies Disease.
Tim, Of course the number one question here becomes "what exactly is causing this bizarre behavior by TGFbeta1 and myostatin? And why is healthy tissue being targeted by them?" And, of course, my answer to that question would be that Vitamin D deficiency would be a prime suspect. Just look at the numbers. 41 percent of all men are estimated to be below 28ng/ml. 50ng/ml is acknowledged to be the optimal level. And Vitamin D is the number one mediator of systemic inflammation levels. It is also the number one mediator of gene expression. And it is also likely the number one mediator of hormone levels across the board. This is just a huge, huge smoking gun. And it fits right in with all the TGF-beta work done by Gonzalez-Cadavid and Lue. It also fits right in with underlying environment of inflammation, glycation and eventual calcification. - George
George, you may have already done this but I can't locate it. Could provide us with a link to the research which states that Vitamin D helps to combat systemic inflammation. Also, while you're at it, you mentioned in one of your posts a reknowned physician who had published a paper demonstrating the positive effect of the use of pentoxifylline in the treatment of Peyronies Disease. (Are you referring to Dr. Lue?) I'd like to show this to my uro who apparently has never heard of pentox and told me that it was not mentioned in any of the literature. Thanks.
Fred
Brant WO, Dean RC, Lue TF. Treatment of Peyronie's disease with oral pentoxifylline. Nat Clin Pract Urol 2006;3:111–5.
Send your doc to:
https://knol.google.com/k/tom-lue/peyronies-disease-acquired-deformity-of/YjC9Puq6/B9bMvg#
This text was written by Tom Lue and is an excellent review of current treatments for Peyronie's Disease and will also discuss (although only briefly) the use of Pentox.
Tim
Quote from: Fred22 on December 02, 2008, 04:03:18 PM
George, you may have already done this but I can't locate it. Could provide us with a link to the research which states that Vitamin D helps to combat systemic inflammation.
Quote from: US News and World Report
Vitamin D Vital for the Heart (http://health.usnews.com/articles/health/healthday/2008/12/01/vitamin-d-vital-for-the-heart.html)
MONDAY, Dec. 1 (HealthDay News) -- A lack of vitamin D, which is absorbed primarily through exposure to sunlight, helps boost the risk of heart attacks and strokes, new research finds. ... "There are a whole array of studies linking increased cardiovascular risk with vitamin D deficiency," noted Dr. James H. O'Keefe, director of preventive cardiology at the Mid America Heart Institute in Kansas City. "It is associated with major risk factors such as high blood pressure, diabetes and stiffening of the left ventricle of the heart and blood vessels. Inflammation is really important for heart disease, and people with vitamin D deficiency have increased inflammation."
Quote from: Excudo Graduate Studies Guide
Lung airway cells activate vitamin D and increase immune response - 2008-11-15 (http://www.exduco.net/news.php?id=3092)
The team then showed that vitamin D activated by airway cells affects two genes involved in immune defense. One gene expresses a protein called cathelicidin that can kill bacteria. The second gene, called CD14, produces a protein that helps cells recognize different kinds of pathogens that could be a threat.
"Vitamin D converted by the kidneys circulates in the bloodstream, but vitamin D converted by other organs appears to stay within those organs and protect them from infection," Hansdottir said. "We were able to see this happen in cells lining the trachea and main bronchi."
The team also found that when lung airway cells are infected by a virus, they express more of the enzyme that activates vitamin D. Hansdottir said the team is very interested in pursuing studies on the role of viral infections in vitamin D production and subsequent effects on lung infections. "Vitamin D not only increases proteins involved in bacterial killing but also can dampen inflammation," Hansdottir said. "Controlling inflammation through vitamin D is good because too much inflammation can cause problems such as sepsis and seems to contribute to autoimmune disease."
I could site more examples I am sure since they are legion. But that would take a lot of time and I think these two are good examples.
Quote from: Fred22 on December 02, 2008, 04:03:18 PM
Also, while you're at it, you mentioned in one of your posts a reknowned physician who had published a paper demonstrating the positive effect of the use of pentoxifylline in the treatment of Peyronies Disease. (Are you referring to Dr. Lue?) I'd like to show this to my uro who apparently has never heard of pentox and told me that it was not mentioned in any of the literature. Thanks.
Fred
I was indeed referring to Dr. Lue. This is the paper you should offer him. - George
http://www.ncbi.nlm.nih.gov/pubmed/18599338?dopt=Abstract
Interesting abstract... "A new mouse model of Peyronie's disease: an increased expression of hypoxia-inducible factor-1 target genes during the development of penile changes."
http://64.233.169.132/search?q=cache:VWGE1Cjs4JUJ:www.bioportfolio.com/indepth/Penile_Induration.pdf+%22The+Safety+and+Effectiveness+of+AA4500+in+Subjects+With+Peyronie%27s+Disease%22+protocol&hl=en&ct=clnk&cd=3&gl=us&client=firefox-a
Website that collates data on Peyronie's - I think for advertisers to target physicians!
From: http://www.bioportfolio.com/indepth/Penile_Induration.html
Tim
Here is a repost I made of comments by Shalomuk in "Our Histories" Since that is not an area for two way discussion I reposted it here. I would like to be the first to welcome you to the forum Salomuk. I for one am a bit curious as to the certainty of your diagnosis and your degree of curve or bend.
Quote from: Shalomuk on December 11, 2008, 02:02:53 PM
Age - 28
Age at onset of Peyronies Disease= I think I had it all my life not really sure of onset.
I lost my virginity at 27 and the girl broke up with me because of this several times. (Same girl). I have the "Hour glass" and when my penis is not fully erect it bends too much and when it is fullly erect it may hurt the girl when I have it in. It was hard to aim for her vagina for one and even when I got it in I think it may have hurt her. Also when the penis is filling up the rest of the penis is large and hard while the skinny part takes time to fill up. It almost is as wide in girth as the other parts.
I was just diagnosed today.
I just wish that when i am partially erect (7 1/2 inches) that the "hour glass" portion will fill up faster. If it was straighter (30-40 degree curvature) it would be easier to maneuver during sex but the most frustrating factor is that it does not harden all the way easily. I am thinking I will try to minimize sleeping on my belly and prevent trauma. (not sure if that will help). I will also try to stop masturbating. I am not sure if that is what caused it.
I really don't know what to do. I am not a sex maniac but I realize that sex will be important for me to have a healthy relationship in the future.
I will be a pharmacist in a couple of years.
Maybe the diagnosis is not certain because the doctor did not even look at it when it was erect or attempting to erect.
Am I to take pictures of it and post?
From flaccid to erect.
1)Penis Engorges with blood
2)Everything in penis engorges except for a small section. At this time it looks like an hour glass.
3)The hour glass slowly fills in
4)Penis is fully engorged and is as hard as a rock but shaped like a banana. the penis does aim almost 45 degrees from shaft but it is a smooth curvature and in one section there is more of a curve.
5)Feels pain inside the urethra after ejaculation. Possible to sperm eating the tissue inside?
edit. The reason I went to the doctor to begin with was because I thought I had a yeast infection in my penis... it kinda burns at tip and burns inside the urethra.
edit2. Have anybody with this disease had yeast infections in penis? I was just wondering if it was a possibility.
Quote from: Hawk on December 11, 2008, 03:40:48 PM
Here is a repost I made of comments by Shalomuk in "Our Histories" Since that is not an area for two way discussion I reposted it here. I would like to be the first to welcome you to the forum Salomuk. I for one am a bit curious as to the certainty of your diagnosis and your degree of curve or bend. Quote from: Shalomuk on December 11, 2008, 02:02:53 PM
Age - 28
Age at onset of Peyronies Disease= I think I had it all my life not really sure of onset.
I lost my virginity at 27 and the girl broke up with me because of this several times. (Same girl). I have the "Hour glass" and when my penis is not fully erect it bends too much and when it is fullly erect it may hurt the girl when I have it in. It was hard to aim for her vagina for one and even when I got it in I think it may have hurt her. Also when the penis is filling up the rest of the penis is large and hard while the skinny part takes time to fill up. It almost is as wide in girth as the other parts.
I was just diagnosed today.
I just wish that when i am partially erect (7 1/2 inches) that the "hour glass" portion will fill up faster. If it was straighter (30-40 degree curvature) it would be easier to maneuver during sex but the most frustrating factor is that it does not harden all the way easily. I am thinking I will try to minimize sleeping on my belly and prevent trauma. (not sure if that will help). I will also try to stop masturbating. I am not sure if that is what caused it.
I really don't know what to do. I am not a sex maniac but I realize that sex will be important for me to have a healthy relationship in the future.
I will be a pharmacist in a couple of years.
Welcome! Shalomuk!
1) The hour glass thing does not sound like Peyronies to me because it corrects with the erection. This type of thing is quite common. If the hourglass is still present when completely erect, that would indicate Peyronies.
2) The banana issue may indicate Peyronies.
3) The fact the doctor told you that you have Peyronies is usually a very strong indicator that you have Peyronies.
4) The burning pain you are feeling in the urethra after ejaculation is probably NOT directly related to Peyronies.
Questions:
Was the doctor who told diagnosed you a urologist or a general practice doctor?
If the doctor who diagnosed you was a general practice doctor, did they refer you to a urologist for follow up?
What country are you located in?
As for posting pictures, I don't think that would be appropriate as we are not doctors, but just patients like you. BUT, If you are going to see a urologist for followup, DO take with you pictures, they are often helpful to the urologist.
Again welcome to the forum! - George
Hey George999
1) The hour glass is present unless the erection is very hard almost as hard as a rock. There was a girl trying to ride when it was 1/2 erect and of course that didn't work out.
2) The banana issue may indicate Peyronies. Yeah it looks like it may be. I remember it being banana like when I had my first erection as a 12 year old or something like that. It would curve up and I had to pee really bad and could barely aim enough to hit the bathtub. I am not sure what this is indicative of. However the penis part next to the trunk I am pretty sure was stiff. it kinda became more flexible as time goes on but not really painful there. I am wondering if me wearing tight pants for many years with a erection and walking around made it deform somehow.
3) The fact the doctor told you that you have Peyronies is usually a very strong indicator that you have Peyronies. He did not actually look at it himself. He gave me viagra last but not sure if i needed it. I just needed to understand what what going on. She was my first gf and it litterally caused her to leave me.
4) The burning pain you are feeling in the urethra after ejaculation is probably NOT directly related to Peyronies. I think it is some kind of infection but I guess yeast infection was ruled out this morning. The doctor insists it is not an infection.. In any event I will try to stop masturbating and see if it improves.
Questions:
Was the doctor who told diagnosed you a urologist or a general practice doctor? He was a general practice doctor at a university. He seemed to be very embarrased about this issus.
If the doctor who diagnosed you was a general practice doctor, did they refer you to a urologist for follow up? No; He ony printed something out from wikipedia from me and made sure that I knew what the name of the disease was.
What country are you located in? USA; Texas
As for posting pictures, I don't think that would be appropriate as we are not doctors, but just patients like you. BUT, If you are going to see a urologist for followup, DO take with you pictures, they are often helpful to the urologist.
Thanks for that tip
Shalomuk,
Recommendation: Get to a sexual specialists or uorlogist who specializes in Peyronies.
As far as the curve you described, it sounds like it could be congenital. Do some research on congenital curvatures.
It doesn't sound to me like you have been properly diagnosed. Too many times people seem to default to I have Peyronies" when in fact it could could be a nubmer of other posible diagnosis. The key is PROPERLY getting a daignosis, not guessing, and not assuming. Proper diagnosis.... proper treatment.
Hawk,
Why does pdpunk.com not like you?
are you really what they say you are? ;D
I don't really think that a personal attack from a blog with three posts, none of which are actually at all helpful, is really much to worry about. An unusual first post. It seems at least somewhat likely that you set the website up yourself and came here to alert us of it, which is quite sad. This site is a valuable resource and a place for people to go to discuss their concerns. If that makes its members fair game for random attacks, then its a sad state of affairs.
I am not going to post my history on the history thread at this time. Too stressed and not clear enough about what all I want to say. I've read a lot on this very helpful forum but have not seen answers to my specific questions, so am posting them here, hoping that it is ok.
My peyronies started about 3 months ago or so. I'm 18 months post prostate surgery and struggling with ED. Since my recent diagnosis of peyronies one week ago, I have stopped all activity down there. And I am concerned that I seem to be shrinking a lot. Prior to the diagnosis, my ED specialist recommended multiple times per week to use my vacuum pump, cialis, or trimix injections and either touch myself or have relations with my wife. Since the surgery and ED I haven't been successful at intercourse without use of the pump and a ring. Now my Uro who diagnosed the peyronies says no more rings or trimix injections. I have an appointment scheduled in 3 weeks with the local specialist but in the meantime I wonder, is it harmful to use a pump and ring maybe once a week for relations with my wife? Will it make things worse?
I'm working on following the meds, and vitamin e, L-carnatine, and Aleve per my Uro, but am not pumping or getting any blood flow. I am worried that, whatever I do, I'll be doing the wrong thing and making things worse. Should I pump? How often? Should I use the hypertherapy? How often? Should I be masturbating? Should I avoid everything until after I see the specialist? My peyronies seems to get worse by the week. I'm depressed about this and almost feel like giving up this aspect of my life.
Please share any "do's" and "don'ts" with this newbie. I'll be sitting here waiting to see some answers on the board. Any advice is welcome and much needed!
saouldigger:
Welcome to forum! First, I will state that I am not a doctor or uro and that my comments are strictly what I have experienced since my radical prostatectomy in April 1995.
I categorically disagree with your uro's statements that you should not have sexual relations, should not use the VED and/or restrictor rings for sex, and not to use the VED at all. Your penis needs to continue to have good blood flow in order to remain healthy. Unless there are some circumstances that you did not relate in your post, I personally see no reason why you should stop all sexual activity due to you being diagnosed with Peyronies Disease. Continued sexual activity has proven to help with Peyronies Disease in a lot of cases, including mine. I have used three different models of VEDs in the past 13 plus years for Peyronies Disease therapy and for sexual activity and have never had any problem or bad experiences with its use.
You should read up on the VED usage and other treatments/therapy that members on this forum are doing. There are many posts relating to positive results from many and varied things the guys are doing.
In my case, the VED has proven to be the best therapy that worked when all others failed. The penile injections for sex (Trimix and prostaglandin shots) only gave me more nodules and plaque. The VED was prescribed and I put it into use immediately and positive results were realized in about 6 months of daily VED usage. Treatment of Peyronies Disease is not an overnight thing and one must follow a strict regimen of whatever he chooses to "treat" his Peyronies Disease.
This forum has many topics and threads that contain a vast amount of information that you should consider. Just check out any and of them so that you can quickly become well informed about Peyronies Disease, what can and cannot be done to help.
Again, welcome to the forum. Feel free to ask any and all questions that come to mind. You will receive answers or information where you can get answers.
Old Man
Quote from: jedwards on December 16, 2008, 07:17:53 PM
Hawk,
Why does pdpunk.com not like you? are you really what they say you are? ;D
Jedwards,
Welcome to the forum. I could not tell if that was a real question or rhetorical humor, but since I try to frankly respond to all questions, here is my honest, direct answer.
I do not know pdpunk and whoever he is, he does not know me. He has never tried to contact me or have dialog with me in private or on the open forum. That in itself is pretty weird for a kid with strong opinions or issues since I am pretty accessible. I glanced at his site once right after it went up. Considering the factual errors and vague limited scope of the site I forgot it existed.
That is about all I can tell you, just another guy on the internet, and who knows what makes him tick. He could be a nut job or a decent guy troubled by his frustrations over Peyronies Disease. In any case I wish him well.
As far as, is what he says about me true, I seriously don't know what he says about me so I cannot answer. ;)
SoulDigger,
Gentle use of the VED without a constrictor ring and without sex - on a daily basis - would be a gentle and healthy thing to do to maintain blood flow and stretch to the tunica. Many of us (me included) have had progression during a period of sexual inactivity (or more specifically for me, a period of few erections and no VED).
Old Man's advice is good, and starting on the Child Boards is a good way to get up to speed on what those who post here think. Our goal is to share information about what has helped each of us individually. You are on the right rtack by getting an expert's help. Good luck.
Tim
Hawk, Whoever it is who is posting as pdpunk.com, anonymously of course, is complaining about the fact that you banished the APDA link to outer darkness because "The APDA, a 501c3, has chosen not to engage in a link exchange with PDS because of the level of disdain and mistrust it has for the medical community, among other things." So isn't this totally weird. Here is a guy who advises people on his site to see a doctor who will prescribe Pentox (if you can find one!), something we having been doing for a long time around here, yet he complains that we "disdain and mistrust doctors", when the very thing we critique them on is stuff like refusing to prescribe Pentox! I dare say a fair number of docs who belong to the APDA will not prescribe Pentox to their patients.
APDA has no obligation to link to us and we have no obligation to link to them. APDA has a good and useful work and I wish them and their physician members nothing but the best. On the other hand, our site represents the interests of the patients. And sometimes the interests of the patients are not necessarily in line with the interests of the physicians. I find it interesting that pdpunk is also spamming the APDA's forum. He is complaining on that forum that nobody is responding to his site. (I wonder why ??? ) He has also claimed in the past that he is attempting to "unify" the peyronies community. ??? Hopefully someone from the APDA will visit his site and realize that he is making them look foolish in his attempt to put down our site. He seems like an old poster on the APDA forum who knows you (Hawk) from that forum somehow.
I also find it interesting that he picks on Tim because he has identified himself as a doctor. Tim has repeatedly stated that he is posting on this site as a patient. But I guess in pdpunk's world, we all "hate" doctors so much that we should not allow a known doctor to post on our site. ???
By the way, I agree with newguy. I would almost bet that "jedwards" is really the guy running the pdpunk blog and he is just desperately shilling our site to try to get hits and move up his google ranks. But, then, on the other hand, he may be a guy from the APDA's moribund forum who just found his way here courtesy of pdpunk's blog. - George
The "pdpunk" site is a bit odd - no one else has posted there. I looked at it ages ago, and it looks somehow a bit different. He seems to have modified some of his older posts and changed them a bit (I think he used to say some negative things about me that are now gone).
Looking there took me to the APDA site. There have been only about 5 posts there since 2007. Some of the last posts well over a year ago were complexly negative "rants" against "ComeBackid" (aka the ComeBacKid here) who was posting fairly positively about linking up together. It was, frankly, odd.
The portal to the APDA site continues to "grow" but the forum continues to languish. Dr. Lue is featured prominently on the entry page. There is good information there, but there is little in the way of back and forth that is helpful for guys with questions. It is true that we can get cranky here with dumb questions or posters who are rude, but we are human and that's what you get with humans - imperfection. At least a guy can get the low down on Pentox and the VED here without getting flamed too badly.
Finally, it is odd, but it looked like "pdpunk" made one APDA forum post and then another that looked like he was talking to himself. That struck me as likely to be a guy with a duplicate membership who forgot which name he was logged in under. (Oops!) I hope that the urge to bicker and the anger gets better, but I do understand where that kind of anger comes from with this problem. Discouraging that behavior here (I recall that Hawk has busted guys (a guy?) here for making different posts that went "back and forth" that came from the same computer!) can be seen as "dictatorial" if people so chose to see it that way, but frankly, it is what helps this site not deteriorate into stupid name calling and flame wars.
Tim
I certainly do not have disdain for doctors in general, and in fact I would have to spin through fifty years of my mental rolladex to come up with an individual doctor or two I have disdain for. Even for those few, disdain is too strong of a word and those doctors have nothing to do with Peyronies Disease.
It is also interesting that Dr. Levine's publisher contacted me to forward a copy of the Levine book for my review. Further, Dr. Levine thanked me for my review among a few other things. A renown psychologists contacted me to commend this site for its contributions. We have had several doctors posting here as patients and one is a moderator. I have strongly defended doctors by name, promoted doctors by name, and defended their right generally to expect pay for their significant efforts and contributions.
I have two close friends that are doctors, so I refuse to wear the title of having disdain for doctors. I do not think any examination of the evidence could support such a claim. Anyone that has ever been led to believe differently has been deceived with distorted hearsay information.
On the other hand, we do not have disdain for patient opinion, patient welfare, or patients' right to communicate openly as a society. This is their discussion forum. The forum component of the PDS is a virtual deck or patio at a friend's house where we can talk freely with those we trust about any issue of concern. One percent of that may be about a less than impressive experience with a specific doctor or a specific appointment with a specific doctor.
Anyone that thinks that should be censored has disdain for patients. If they are waiting for it to be censored here as it has been censored elsewhere, they will be waiting until hell freezes over. I make no apologies for that. In fact, I credit it for establishing this forum as the only functional English speaking forum for Peyronies Disease in the world.
Note to all:
I highly endorse the previous post by Hawk and support his position on this forum 110%. That means that I have the utmost respect of and confidence in his position relative to doctors. After all, we as patients sometimes forget that doctors are human, that they can and will make bad decisions or judgments with patients just like anyone else.
So, why can't we just move on, let the pdpunk stew in its own juice and not let it bother us. Proceed with vigor and we shall prevail.
Forget the "old forum" it has no place in the world of our "modern" and up to date forum where all can have their say in any manner.
Enough said, let's march on!!!
Old Man
Here are my weekly mailings I get on Peyronie's related topics that appeared in the medical literature. Some are pretty interesting. Seems we pave the way when it comes to the VED!
<1>
Full Text Link Available
UI 19088529
AU Bell DS.
FA Bell, David S H.
IN Southside Endocrinology, Birmingham, AL 35205, USA.
dshbell@yahoo.com
TI Peyronie disease in association with carvedilol: a case
report.[see comment].
CM Comment in: South Med J. 2008 Nov;101(11):1092-3; PMID: 19088515
SO Southern Medical Journal. 101(11):1157-8, 2008 Nov.
AB Beta blockade is associated with the onset and progression of
Peyronie disease (Peyronies Disease). To date, there has not been a report of Peyronies Disease
occurring with the alpha/beta blocker carvedilol. It remains
unproven but likely that carvedilol was the cause of the Peyronies Disease in the
patient described in this case. It is hypothesized that because of
carvedilol's vasodilating alpha adrenergic receptor stimulation and
its anti-inflammatory effect, Peyronies Disease occurs less frequently with
carvedilol than with other beta blockers. However, in this case the
protective properties of carvedilol, like vasodilation and the
anti-inflammatory effect, may not be sufficient to overcome its
vasoconstricting beta adrenergic receptor blockade.
PT Case Reports. Journal Article.
<2>
Full Text Link Available
UI 19088515
AU Wooten JM.
FA Wooten, James M.
TI Drug-induced sexual problems.[comment].
CM Comment on: South Med J. 2008 Nov;101(11):1157-8; PMID: 19088529
SO Southern Medical Journal. 101(11):1092-3, 2008 Nov.
PT Comment. Editorial.
<3>
Full Text Link Available
UI 18947517
AU Zippe CD. Pahlajani G.
FA Zippe, Craig D. Pahlajani, Geetu.
IN Glickman Urological and Kidney Institute at Marymount, The
Cleveland Clinic, Garfield Heights, OH 44125, USA. zippec@ccf.org
TI Vacuum erection devices to treat erectile dysfunction and early
penile rehabilitation following radical prostatectomy.
SO Current Urology Reports. 9(6):506-13, 2008 Nov.
AB Vacuum erection devices (VED) are becoming first-line therapies
for erectile dysfunction and preservation (rehabilitation) of
erectile function following treatment for prostate cancer.
Currently, phosphodiesterase-5 inhibitors have limited efficacy in
elderly patients or patients with moderate to severe diabetes,
hypertension, and coronary artery disease. Alternative therapies,
such as VED, have emerged as a primary option for patients
refractory to oral therapy. VED has also been successfully used in
combination treatment with oral therapy and penile injections. More
recently, there has been interest in the use of VED in early
intervention protocols to encourage corporeal rehabilitation and
prevention of post-radical prostatectomy venoocclusive dysfunction.
This is evident by the preservation of penile length and girth seen
with the early use of the VED following radical prostatectomy. There
are ongoing studies to help preserve penile length and girth with
early use of VED following prostate brachytherapy and external beam
radiation for prostate cancer. Recently, there has also been
interest in VED to help maintain penile length following surgical
correction of Peyronie's disease and to increase penile size before
implantation of the penile prosthesis.
PT Journal Article.
<4>
Full Text Link Available
UI 18947515
AU McCullough A.
FA McCullough, Andrew.
IN Department of Urology, New York University School of Medicine,
New York, NY 10016, USA. andy.mccullough@nyumc.org
TI Penile change following radical prostatectomy: size, smooth
muscle atrophy, and curve. [Review] [32 refs]
SO Current Urology Reports. 9(6):492-9, 2008 Nov.
AB Dr. Patrick Walsh's description of nerve-sparing prostatectomy
was an important landmark in the surgical treatment of prostate
cancer. Despite the dramatic improvement in postoperative potency
rates, anecdotal reports of penile size loss were increasingly
reported by patients. Experimental studies in animals revealed
penile fibrosis and corporal cavernosal smooth muscle apoptosis
after cavernosal nerve ablation. After an observational
cross-sectional study demonstrated a time-dependent loss of penile
length and circumference in men presenting with erectile dysfunction
after nerve-sparing prostatectomy, several prospective studies
supported the observational study. A prospective penile biopsy study
before and after surgery demonstrated replacement of corporal smooth
muscle with collagen and provided a possible explanation for loss of
penile length. The mechanism has not yet been elucidated. This
article reviews in detail the existing studies on loss of penile
size after prostatectomy and possible etiologic mechanisms.
[References: 32]
PT Journal Article. Review.
<5>
Full Text Link Available
UI 18947513
AU Montague DK. Angermeier KW.
FA Montague, Drogo K. Angermeier, Kenneth W.
IN Center for Genitourinary Reconstruction, Glickman Urological and
Kidney Institute, The Cleveland Clinic, Cleveland, OH 44195, USA.
montagd@ccf.org
TI Increasing size with penile implants.
SO Current Urology Reports. 9(6):483-6, 2008 Nov.
AB Penile prosthesis implantation is suitable treatment for men with
erectile dysfunction when nonsurgical treatment options fail or are
otherwise unsatisfactory. Three-piece inflatable penile prostheses
closely approach the ideal of producing normal penile flaccidity and
erection. Nevertheless, even in men with normal corpora cavernosa,
many report their prosthetic erection is shorter than their former
natural erection. This is due to the lack of glans tumescence and
the use of penile cylinders, which only expand in girth. Using
girth- and length-expanding cylinders can decrease the loss of
penile length frequently seen with prosthesis implantation. Some
penile prosthesis recipients have abnormal corpora following radical
prostatectomy or after removal of an infected penile prosthesis, or
as the result of Peyronie's disease, obesity, or ischemic priapism.
In these men with abnormal corpora, associated penile-lengthening
procedures can be combined with penile prosthesis implantation.
However, experience is limited with these combined procedures.
PT Journal Article.
<6>
Full Text Link Available
UI 18947504
AU Shindel AW. Lue TF.
FA Shindel, Alan W. Lue, Tom F.
IN Department of Urology, University of California, San Francisco,
San Francisco, CA 94143, USA.
TI Peyronie's disease: past, present, future?.
SO Current Urology Reports. 9(6):425-7, 2008 Nov.
PT Journal Article.
<7>
UI 18564146
AU Rosen R. Catania J. Lue T. Althof S. Henne J. Hellstrom W.
Levine L.
FA Rosen, Raymond. Catania, Joseph. Lue, Tom. Althof, Stanley.
Henne, Jeff. Hellstrom, Wayne. Levine, Laurence.
IN New England Research Institutes, Watertown, MA 02472, USA.
rrosen@neriscience.com
TI Impact of Peyronie's disease on sexual and psychosocial
functioning: qualitative findings in patients and controls.
SO Journal of Sexual Medicine. 5(8):1977-84, 2008 Aug.
AB INTRODUCTION: There are no validated scales for assessing the
psychosocial impact of Peyronie's disease (Peyronies Disease), which affects
approximately 5-10% of men over age 50. AIM: To develop a
psychometrically valid outcome measure for assessing psychosocial
and sexual consequences of Peyronies Disease. To conduct a qualitative study of men
with Peyronies Disease and age-matched controls, and design a new patient-reported
outcome measure of Peyronies Disease. METHODS: An expert advisory panel identified
relevant topics and conceptual areas to be addressed based on
clinical experience and literature reviews. A conceptual model was
developed to serve as a discussion guide for qualitative interviews
with geographically and ethnically diverse Peyronies Disease subjects and controls.
Interviews were conducted in a focus-group format by a trained
interviewer and were recorded and transcribed for qualitative
analysis according to grounded theory concepts. MAIN OUTCOME
MEASURE: Focus-group interviews. RESULTS: Focus-group interviews
were conducted with 64 men (28 Peyronies Disease patients, 36 controls) in 13
separate focus groups over a 3-month period. Blinded analysis of the
interview transcripts identified four core domains: (i) physical
appearance and self-image; (ii) sexual function and performance;
(iii) Peyronies Disease-related pain and discomfort; and (iv) social stigmatization
and isolation. Based on feedback from participants and experts, a
new outcome questionnaire was developed to assess core domain
responses in a structured, self-report format. CONCLUSIONS: This
qualitative study helped to refine and broaden the focus of the
conceptual model for further assessment. It also confirmed that Peyronies Disease
has a major impact on sexual and psychological function in these
patients.
PT Journal Article. Research Support, Non-U.S. Gov't.
<8>
UI 18554257
AU Nelson CJ. Diblasio C. Kendirci M. Hellstrom W. Guhring P.
Mulhall JP.
FA Nelson, Christian J. Diblasio, Chris. Kendirci, Muammer.
Hellstrom, Wayne. Guhring, Patricia. Mulhall, John P.
IN Department of Psychiatry and Behavioral Sciences, Memorial Sloan
Kettering-Cancer Center, New York, NY 10022, USA. nelsonc@mskcc.org
TI The chronology of depression and distress in men with Peyronie's
disease.
SO Journal of Sexual Medicine. 5(8):1985-90, 2008 Aug.
AB INTRODUCTION: For the practicing clinician, appreciating
Peyronie's disease (Peyronies Disease) significant negative psychological impact is
apparent. Despite this, there exists not a single study using
validated instruments assessing this issue. AIMS: To document the
effect of Peyronies Disease on the psychosocial status of men. MAIN OUTCOME
MEASURES: The Center for Epidemiological Studies Depression scale
(CES-D) for evaluation of depression and the SF-36 for quality of
life assessment. METHODS: Men (N = 92; 54 +/- 11 years of age)
presenting for Peyronies Disease evaluation completed the CES-D, Short Form-36
(SF-36), and an inventory regarding Peyronies Disease. Partners were not assessed.
RESULTS: A vast majority of men (88%) had a partner with a mean
partner age of 49 +/- 11 years. The median duration of Peyronies Disease at
presentation was 12 (1-360) months. As a whole, 48% were classified
as depressed on the CES-D (26% moderate, 21% severe). These subjects
were then placed into groups according to the length of time since
diagnosis of Peyronies Disease. Length-of-time groups were: 0-6 months, 6-12
months, 12-18 months, and >18 months. The percent of men scoring
above the CES-D cutoff for depression remained consistently high
with no significant difference across time since diagnosis groups.
These results are supported by data from the Mental Health subscale
(MHS) of the SF-36 (lower scores indicate lower mental heath). For
the entire sample, the MHS standardized mean of 46.80 was
significantly lower (P < 0.05) than the general male population
standardized mean of 50. The MHS means stayed consistently low (no
statistical difference) across time since diagnosis groups.
CONCLUSIONS: Using validated instruments, we have demonstrated that
48% of men with Peyronies Disease have clinically meaningful depression that would
warrant medical evaluation. This high level of depression stayed
consistent across time since diagnosis. These data suggest that most
men do not psychologically adjust to their diagnosis of Peyronies Disease and all
men with Peyronies Disease should be considered appropriate mental health
screening.
PT Journal Article.
Dr. Tim:
Finally, the VED therapy that I have advocated for oh so many years now is getting recongized by the medical community. Hopefully, more and more uros will get on board and develop a sysem of rehab therapy for ED, Peyronies Disease and post radical surgery.
I suppose that I am light years ahead of my time with this therapy, huh?
Old Man
Quote from: Old Man on January 26, 2009, 10:39:06 AM
I suppose that I am light years ahead of my time with this therapy, huh?
Old Man
YUP. As you know, I support VED therapy. I had success with it like some other guys that took the plunge and stuck with the program. With recognition and affirmation by urologists, VED therapy would get the credibility it so much deserves.
4 months with no pain - finally some blue sky...
Aftershave is a lotion, gel, balm, or liquid used mainly by men after they have finished shaving. It may contain an antiseptic agent such as alcohol to prevent infection from cuts as well as numb damaged skin, a perfume to enhance scent, and a moisturizer to soften the skin. An alcohol-based, fragrance-free astringent can be used as an aftershave. It is said that the alcohol in the aftershave closes pores in the skin and prevents irritation ("razor burn").
Many fashion designer houses lend their names to brands of aftershave, and thus aftershave is sometimes mistakenly referred to as Eau de Cologne. <Web link deleted as SPAM>
This user is banned for Spamming the forum
Administrator
What in the world does after shave lotion have to do with treating Peyronies Disease????? I have never heard of Peyronies Disease needing a shave!!!
Old Man
Quote from: Old Man on January 30, 2009, 04:25:57 PM
What in the world does after shave lotion have to do with treating Peyronies Disease????? I have never heard of Peyronies Disease needing a shave!!!
Old Man
Shaving the pubic area for better VED seal? Otherwise like you Old Man, no comprende? ::) ::)
Mikesb:
Shaving the pubic hair for a better seal does not cause any problems. Using after shave that helps prevent razor burn just might irritate the sensitive skin of ones most prized possession. Don't think I would entertain using it!
I could see using shaving cream, in fact several guys on the forum report using it while using the VED in their shower and/or tub baths.
FYI, no speaka da Espanol, just good USA Southern drawl!!!
Old Man
Guys,
I am deleting these posts. The first poster was banned. It was a spam account for the sole purpose of posting commercial links on our forum. He registered on name, posted a Viagra internet sales link the registered another name and posted an aftershave link.
Oldman first noticed the issue and then Mikesb responded without reading the "banned" notes on the original post. Now we have a discussion that disrupts our topic. Therefore I will clean the topic up for readers by deleting the post that violated our rules and all of our responses.
In the future, when you see something this obviously off topic, just PM me rather than posting.
Thanks Guys!
Hey all -
This is probably way off topic, but I got this through an Engadget feed (http://www.engadget.com/2009/02/15/laser-bonded-healing-could-replace-needle-and-thread/). Started me wondering what applications to Peyronies this might all have in the future.
"It sounds more like something you'd see in X-Men than on an actual operating table in real life, but a team at Massachusetts General Hospital has developed a way to heal surgical incisions with laser light. Christened laser-bonded healing, the methodology has been studied for years, but up until now, scientists have found it impossible to find the perfect balance of heat required to coax tissue into healing itself back together. Irene Kochevar described the process as "nano suturing," as diminutive collagen fibers are woven together in a way that the old-fashioned needle-and-thread method simply can't match. The benefits, as you can likely imagine, are numerous: less scarring, faster recovery, the potential for fewer infections and bragging rights that you were struck with lasers and survived. Still, the procedure is far from becoming commonplace in ORs, given that the dermatological procedure hasn't even been submitted to the FDA yet. 'Til then, it's up to you and Wolverine to figure things out."
McNally
Does anyone know why the Lariche procedure isn't being used in the u.s.? it seems much more straight forward and less intrusive-------thanks
No, we do not know why. We suspect that it is also not being used in Europe since we have found no one in Europe that knows anything about it and we have many European members. We have actually written and translated emails into French to contact doctors that were associated with this procedure but get no response.
It is as illusive as the legendary unicorn, maybe more so.
Less intrusive? To me it would seem taking a needle and stabbing it into your penis several times in different locations is very intrusive! While the lariche technique was once touted as extremely effective, it has simply fallen off the face of the earth and I have yet to hear of anyone from europe on this forum that had the lariche technique. If it was so effective it would surely have made its way to the usa.
Comebackid
thanks for trying to clarify the lariche----------guess it will remain a mystery for some time
Guys,
Did anyone have a flexible cystoscopy done? My doc suggested it when I mentioned that I periodically sense discomfort when urinating. I really think it's due to Peyronies Disease, sometimes the plaques are sore and overall, their presence in my opinion, causes pressure on the urethra.
I'm thinking about delaying it. The thought of a long cord shoved into my... just doesn't seem pleasant.
Thanks
Believer,
I have not spoken to one person that had that done. I'd get on pentox if you don't have any health problems. Sometimes I have issues urinating or have some slight pain, I think thats normal depending on how bad your curve is. I think that would be to invasive and cause trauma. I'm not a doctor and you should make your own decision, but all the docs used to say how great verapamil injections were and they didn't pan out either...
Comebackid
I had that done in mid 2006 and everything was fine.
I've had it done multiple times. Its not the most pleasant thing in the world, but not terribly risky if you have a competent doc. I had it back before they had the newer flexible arrangement. They used a solid tube back then and pushed it all the way up into the bladder believe it or not. The new equipment is a piece of cake by comparison. If your doc is suspicious of a possible problem, you should probably go for it. If nothing else, it will rule stuff out fairly easily. If nothing is found, it is probably not physical pressure or constriction. It is more likely a general inflammatory syndrome. Inflammation in adjacent areas can spread as cytokines drift into adjacent tissues. But Comeback is giving you excellent advice in recommending the Pentox. I wish I had got on it sooner. It is really the best oral treatment out there. - George
***IMPORTANT***
I discovered a website that offers a free download of Dr. Levine's textbook - "Peyronie's Disease: A Guide to Clinical Management".
After a brief registration, you may download at: http://www.bioxplorer.com/content/view/245/111
I am not aware of any copyright issues and I am not encouraging illegal use of copyrighted material, but I do want to bring to your attention that there is such a website where the book can be downloaded free of charge.
I encourage all of you to get your hands on this book by any means you deem proper as it is a GREAT resource for all of us. Please read it and share your thoughts.
Believer
I want to make it clear that the book Believer is talking about is not Dr. Levine's Patient Guide. The book offered on the site he linked to is the more scholarly book on clinical management. This book was more directed at the medical community and sold for over $100.00. It must be that the listed site has bought rights to this book or that they have some sort of arrangement they have worked out. It may even be that the paying market for the book has simply been exhausted.
Great find - lots of information.
Tim
i couldn't get Levine's book to open after downloading it. For those of you who were able to open it, what application did you use?
Google "winrar" - it's a free extractor.
From the Channel 4 in the UK. A peyronie's consultation, nesbit procedure and follow up. It's a vey short piece, but at least it helps to increase recognision of the condition:
http://www.channel4embarrassingillnesses.com/video/consultations/consultation-peyronie-s-disease/
Hopefully it's viewable outside of the UK.
just came back from overseas and no dramas with my ved at customs - it was even using it at the airport terminal...only joking
Quote from: newguy on April 01, 2009, 11:33:37 PM
From the Channel 4 in the UK. A peyronie's consultation, nesbit procedure and follow up. It's a vey short piece, but at least it helps to increase recognision of the condition:
http://www.channel4embarrassingillnesses.com/video/consultations/consultation-peyronie-s-disease/
Hopefully it's viewable outside of the UK.
so would one recommend the nesbitt procedure based on this?? - the patient seemed happy - was the doctor real??
Yes, he is a real doctor specialising in sexual health, but I suspect that those taking part are given a much more thorough examination than the snippet broadcast. The aim of the program really is to highlight intimate problems and conditions that are often uncomfortable to talk about, so from that perspective I think they did a good job. Millions of people likely saw the show when it was originally broadcast.
Where the video is a little dubious is the rose tinted nature of it. There was little talk of complications or anything of that nature.
Thanks for the post Newguy.
This outfit contacted me VIA email about a year ago about this segment and solicited information, and contacts. They were interested in doctors and patients that might help. We had several back and forth emails and I think a member or two actually contacted them. At any rate I am happy for the exposure that it gave to Peyronies Disease. I am sure many saw it that will now recognize symptoms that would have otherwise been baffling. It also helps to open a more pubic dialog.
A member indicated his puzzlement over the fact that we seem to have an inordinate number of young men in the 20 - 35 year old range that report Peyronies Disease. This is strange since it is primarily an older man's disorder. Adding to the puzzlement is the fact that our sister Dupuytrens Contracture (DC) forum has almost no such cases outside of the typical age group on their forum. That is particularly strange since there is a strong association between these two conditions. Why would 2 associated disorders typical of older men result in only one of the two showing a high representation of men outside of the medical norm as far as age is concerned?
One has to at least ask the question IF it is possible that because of character of concern / obsession over things sexual in young men if some of these cases are anxiety gone awry. Few young men obsess over finger angle or flexibility. Is it possible that there are more things that mimic Peyronies Disease than there is that mimic DC?
These are questions that deserve examination.
Did anyone else catch a sort of back handed, indirect reference to Perrine's in the final ER episode tonight?
I'll try to capture it off of my DVR & post if if the segment isn't too big (only about a minute or two).
Hawk -
I know it's not something that can be directly proven, but I know in my case and the case of other young men here that we sent our hormones out of whack with medications. In my case (and others) it was propecia. That the "medicine" inhibits TGF-B and certain testosterones (the same hormones that assassinate hair follicles are, cooincidentally, the same responsible for repairing the smooth tissue in the penis) seems proof enough to me that this is the culprit. If you see a dead man with a bullet wound, and a smoking gun laying nearby, you don't guess that some other criminal came by with a gun of his own, shot the man and run off. So while there's no studies of this (I doubt Pfizer would let something like that get off the ground, anyway) I'm certain this is the case.
In my specific instance, I'd read about the effect of propecia causing a low libido, and I was determined to prove that wrong in my case - by having lots of sex with my girl and by myself! I took propecia for two weeks, but that was enough. Of course, that had to have caused the microtrauma that couldn't heal because of the testosterone inhibition, which caused the fibrotic cascade we're all so familiar with. I've read on propecia side effects forums (there is one good one out there, and they even reference us here in this board!) that even after taking the medicine hormone levels rarely return to normal in those adversely affected. I know that's my problem.
As for others, well - remember, we young people now have grown up eating hormone-enhanced meats, everything we eat has high fructose corn syrup, there's tons of chemicals around us in the air and water and we've been experiencing more than 30 years of government deregulation and a laissez-faire FDA that have added to the problem. Similarly, young people are becoming sexual earlier, which only adds more time in which we can injure ourselves, although I feel this is not a very important variable. How it is pertinent is that young people turn to the internet to help diagnose maladies, which would undoubtedly lead them here. Hence the skewed age range. Maybe.
I'd never really bought into this propecia link, but more and more people do seem to be bringing it up. Anything that could tip the balance to worth keeping in mind I think. And also, in these image conscious days, I suspect that many more young people are taking this kind of medication, which is no doubt very easy to get hold of online too. If there is any kind of link, I can see how it would come about.
I agree with Hawk in part, I do think that a few of the young people here do with conditions which may not be peyronie's. Even so their symptons often sound worrying, so it's good to have been around until they resolve, as it brings home the variety of these problems and may be of help to guests on the site.
The last factor I think, may be the penis extension community. Devices and techniques to increase penis length are pimped all over the place. I myself injured myself using a seemingly safe method only last year (traction devide), though admitedly I have been suffering from peyronies from many years, so likely am far more prone to suffer from any such endevour. I'm going to make another post about this in a couple of months, as I fear that current problems i'm experiencing relate directly to this.
The above point being that all of these devices, and emphasis on increasing length target young people and as such I think many more of those suseptible to these kind of health problems develop them early on. A quick search on the nets biggest bodybuilding site, with mostly young members, returns hundreds of results for the word "jelqing". It makes sense to me that many people do not know the risks and end up injurying themselves and possibly putting it down to something else. I'm sure many go on to recover, but the point is that people are people their body under undue stress at an early age, so it possibly accelerates pre existing conditions. Peyronie's is still in the dark, education needs to be directed at young people.
Quote from: ocelot556 on April 03, 2009, 01:49:34 AM
I took propecia for two weeks, but that was enough. Of course, that had to have caused the microtrauma that couldn't heal because of the testosterone inhibition, which caused the fibrotic cascade we're all so familiar with.
Why would that fibrotic cascade only target the penis and not DC?
Quote from: ocelot556 on April 03, 2009, 01:49:34 AMAs for others, well - remember, we young people now have grown up eating hormone-enhanced meats, everything we eat has high fructose corn syrup, there's tons of chemicals around us in the air and water and we've been experiencing more than 30 years of government deregulation and a laissez-faire FDA that have added to the problem.
Then we would expect to see a high incidence of DC among young men.
Quote from: ocelot556 on April 03, 2009, 01:49:34 AMSimilarly, young people are becoming sexual earlier, which only adds more time in which we can injure ourselves, although I feel this is not a very important variable. How it is pertinent is that young people turn to the internet to help diagnose maladies, which would undoubtedly lead them here. Hence the skewed age range. Maybe.
I do not believe there is any indication that young people become sexual earlier than in the past. Even if true, how does becoming sexual cause Peyronies Disease? Finally, wouldn't young men with DC also search the internet and skew the results?
The real question restated is - Why would only one of two related fibrotic diseases be represented by the same group of young men on the internet?
Hawk - It may be the case that some young people here will go on to develop Dupuytren's contracture. It's something that tends to manifest more with age. The same could be argued about peyronie's but of course if an injury of some kind occurs, who is to say that the pre existing factors cannot kick in an an early age? It may be that people are more prone to injury now than before, for some of the reasons I noted. Either that or that simply by chance those coming to the forum do not suffer from both, or that some have conditions that are concerning, but not peyronie's.
Newguy -- http://www.ncbi.nlm.nih.gov/pubmed/9589555?dopt=Abstract -- this is a Peyronies Disease forum, not propeciahelp.com, so I won't belabor the point. But studies are coming out showing how much dht inhibitors can affect hormonal levels. Altering the hormonal cocktail in your body is playing with fire. Sometimes, you get burned.
Hawk -- I can't imagine that Dihydrotestosterone is involved in the repair functions of the hand, but it is most certainly involved in the repair functions of the penis. I'm obviously not saying that this is the cause of all young Peyronies Disease reports, but I don't think many kids are waking up at 21 after playing with their members since 13, and going "woah, this congenital curve that's always been there is really scary!" - more likely they see NEW structural change (be it Peyronies Disease or otherwise) and react by self-diagnosing on forums like these.
Similarly, DC is listed as a slow and gradual process. Peyronies Disease is hardly that in many cases. If my pinky is slowly curving/tightening, I'll see a doctor but unless I'm an athlete or needed my hands for something skillful I'm not going to panic. When I see my penis curving, I'm going to panic. I'm going to run to the most accessible information I have, and that's the internet.
And I admitted that "young people being more sexual" is just me spitballing for answers - but go to the mall and look at the young girls. Did they dress that way in the previous generation? Did young men have an unlimited amount of access to free, anonymous digital pornography the way they do now in the age of the internet? I agree this is a tentative connection at best, however.
ocelot556 - Thanks for the link and thought provoking post.
Just as a note. I took propecia too when Peyronies Disease set in. I was 24 years old that time. 9 years ago.
About an hour ago I was having sex with my GF, slipped out, and ran into her. I kept going but now I'm freaking out because I can't tell if there is pain or swelling because I'm drunk/high and I don't know if I things are the same but it seems so much more swollen when flaccid and it is difficult to piss. This is just the perfect thing to ruin my night.
richB - Sorry to hear about this. Take ibuprofin for the next week or two just in case and hope for the best. See how you feel in the morning.
richb - maybe get on the pentox - btw ouch!!!!! - just imagining this is making my eyes water and my balls crawl up inside me...
Rich
Did you hear or feel a snap when the accident happend? If so go to the ER you may have a fractured penis (it happens).
If not take 800mg of ibuprofen. I have arthritis and take 800mg of IB twice a day and can take it 3 if needed. Prescribed by my doctor but you an buy it cheaper over the counter at Walmart or Sams.
Jackp
No snap, no bruising, no sudden flaccidity. Just general pain and trouble urinating. It went away with some ice. Still sore this morning, feels like I rolled my ankle or something, but in my penis. Ugh I just want it to stop aching. Took some IB earlier this morning when I woke up. Erections still achievable. I don't know if I should seek medical attention or just try and let it heal on its own.
richB - If there is no bruising or snap I don't think they would suggest anything other than the course you are taking. Others feel free to chime in if you feel differently. I would definitely stick with the iboprofin for a couple of weks though, even if the pain subsides quickly. Let us know how it goes.
Going to the ER would be a waste of time and money at this point I think. I just need to give it time to heal. Note: there is no visible swelling, just general inflammation. Icing it for about an hour or two really helped, along with some IB. Urinating has returned to normal, although the discomfort is causing trouble relaxing the pelvic floor. Feels better already but I'm going to give it 2-4 days and if nothing changes then it's time for some professional help.
You know they should really include this in sex ed. Where is the awareness? I mean there's safe sex, then there's safe sex, if you get what I'm saying.
Rich
Now you know what they say about getting a 9" stroke with a 6" penis. If you miss ??? :'( :o
Maybe I should have put this under the Light Side
Jackp
i think i finally understand this - initially i had a nodule that lasted with pain for 6 months and this caused a bend - over time and with meds etc the pain subsided and i thought that i was better - ok i still had the curve but the nodule seemed to disappear - i then get another bout of Peyronies Disease and i get a second nodule on the side and this leads to another kind of deformity on my disk - so all up ive had 2 nodules and 2 changes to my dick based on location of the nodules - the trick as i understand it is to limit the number of new nodules popping up thereby reducing the chances of any further dents and little nasties that appear and change the shape of your dick - so if i do get another new third nodule then this will be the result of a new bout of Peyronies Disease and therefore I will get another new dent to add to the collection - over years i guess if you have say 10 new bouts of Peyronies Disease and 10 new nodules then you should have 10 new deformitiies which would make your dick look like an old wooden bent stick found on the ground - is this right?? if so you might as well chop it off and start again
Quote from: Iceman on April 05, 2009, 06:43:13 AMover years i guess if you have say 10 new bouts of Peyronies Disease and 10 new nodules then you should have 10 new deformitiies which would make your dick look like an old wooden bent stick found on the ground - is this right?? if so you might as well chop it off and start again
Sounds like my penis. Though I can't count the nodules anymore. Too many everywhere. There are places with multiple nodules in one area. I think I bite the bullet and let it cut all out. If I'm impotent after that the implant is the option.
Iceman - I personally think that new nodules appearing sometime after an initial bout, and not always "entirely" new. If the structure of the penis has been damaged in some way, maybe certain areas are limited in terms of blood supply/healing and are in a perpetually delicate state. Maybe a very slight change can occur at one time or another and bring about what appears to be an entirely new bout of peyronie's, when in fact it's linked to the general condition of the penis and to previous damage.
I believe that use of the VED and meds/vits can be used to get keep the penis as healthy as possible and improve or maintain good bloog supply. Meds can also help to dampen inflammation. Traction is likely of some use to reshape the scartissue somewhat (as can the VED). Do any of these methods actually create new blood vessels though? I would think that they increase the size of, and help blood travel through existing vessels and capillaries and are limited to that role.
What got me thinking about this area, was the post made by a guy here asking if he should stop using a nicotine inhaler (he was a smoker, and had switched to this for health reasons). An internet search revealed that nicotine actually creates new blood vessels. It is of course an addictive substance though, so I wouldn't advise anyone to start using such a device. However, I can interested in how others feel about possible future treatments that help to create new blood vessels. Surely this could be very useful for those experiencing problems like peyronie's. At least as an alternative method.
It's worth noting that cardio exercise has been noted to create new blood vessels in the heart and brain. Maybe an exercise regime that is somewhat strenuous (or at least moderate) is something that as a community we should be paying as much attention to as vitamins etc. Of course, we already effectively "exercise" the penis with existing methods used here, but maybe we need to think more about exercise in general and also new ways to maximise bloodflow and possibly new drugs that may aid this process?
Please comment on my thoughts.
Erections painful today... would it be too early to determine any Peyronies Disease?
Quote from: richB on April 05, 2009, 09:25:43 AM
Erections painful today... would it be too early to determine any Peyronies Disease?
I think so yes. If you have injured yourself, then it would certainly take a while to heal. Take ibuprofin every day and see how the pain feels after a week or two.
Costa WS. Rebello SB. Cardoso LE. Cavalcanti AG. Sampaio FJ. FA Costa, Waldemar S. Rebello, Sabrina B. Cardoso, Luiz E M. Cavalcanti, Andre G. Sampaio, Francisco J B.
IN Urogenital Research Unit, State Universiy of Rio de Janeiro, Rio de Janeiro, Brazil.
TI Stereological and biochemical analysis of muscular and connective tissue components in the penile corpus cavernosum adjacent to the fibrous plaque of Peyronie's disease.
SO BJU International. 103(2):212-6, 2009 Jan.
AB OBJECTIVE: To investigate the structural organization of the connective tissue in the corpus cavernosum (CC) adjacent to the fibrous plaque in Peyronie's disease (Peyronies Disease) using stereological and biochemical techniques, as most studies on Peyronies Disease have focused on the analysis of the fibrous plaque that forms in the tunica albuginea (TA). Because this fibrotic reaction is mediated by various inflammatory soluble factors, adjacent connective tissues might also be affected and this secondary effect might explain, for example, the erectile dysfunction that occurs in Peyronies Disease.
PATIENTS AND METHODS:
During surgery biopsies were taken from the CC adjacent to the fibrous plaque and from the plaque itself in seven patients with Peyronies Disease (mean age 48.3 years). All the patients had normal erections. Control samples were similarly located samples from 'normal' penises obtained during autopsy of five men (mean age 52.3 years). Tissue samples were stained with Weigert's stain (elastic fibres), Van Gieson's stain (connective tissue), and Sirius red (collagen). Stereological analysis was done using a 42-point grid to determine volumetric densities (Vv). Total collagen content was estimated as micrograms of hydroxyproline per milligram dry CC.
RESULTS: The Vv of elastic fibres was significantly reduced in Peyronies Disease by 17.3% compared with controls, at a mean (sd) of 19.49 (3.27)% vs 23.56 (1.87)% (P < 0.05). While in Peyronies Disease the Vv of smooth muscle at 34.46 (2.06)% and connective issue at 35.39 (6.15)% were not significantly different from those of controls at 38.38 (3.17)% and 38.02 (5.03)%, respectively. The Vv of elastic fibres in the fibrous plaque was decreased by 38.3% compared with the normal TA, at 20.25 (5.49)% vs 32.81 (4.75)% (P < 0.02). The mean (sd) collagen concentration in the CC from controls was 77.94 (24.26) microg/mg and in the patients with Peyronies Disease was 66.57 (19.39) microg/mg, which did not differ significantly. Sirius red-stained sections under polarized light showed that, in the normal CC, collagen-associated colours were homogeneously distributed. However, in the Peyronies Disease samples, stained collagen had a disrupted orientation and had a more heterogeneous birefringence, implying looser collagen bundles.
CONCLUSIONS: The quantitative analyses indicated that collagen in the CC close to the fibrous plaque was not affected, although its organization was noticeably altered. The CC elastic fibres were reduced though, and there was a similar change in the fibrous plaque of the TA. These results suggest that, although occurring primarily in the TA, the Peyronies Disease fibrous plaque may induce changes in the adjacent CC.
PT Journal Article.
I am sort of freaking out... pain is now verging on excruciating. I have a doctors appt scheduled today and if he decides to send me to the ER, then so be it. Swelling hasn't necessarily subsided. Urination is painfully difficult. Erections seem more bent than usual..
Would this honestly happen to me twice in one 4 month period? Are you kidding me? What the hell?
richB,
Good luck man, keep us posted on how things go. Take more anti-inflammatories and I also heard that warm baths help alleviate pain to some extent.
RichB - I'm very sad to hear about this. Please keep us informed with any new developments.
Tim--
That's an interesting study, but for us here in the Forum I think it's akin to "Scientists discover blue sky" -- unfortunately those of us with the disease and actively studying it know that Peyronies Disease can infect the corpus cavernosum!
But, hey - any studies into Peyronies Disease can only increase the profile of the disease. Thanks.
Quote from: richB on April 06, 2009, 01:32:48 PM
I am sort of freaking out... pain is now verging on excruciating. I have a doctors appt scheduled today and if he decides to send me to the ER, then so be it. Swelling hasn't necessarily subsided. Urination is painfully difficult. Erections seem more bent than usual..
Would this honestly happen to me twice in one 4 month period? Are you kidding me? What the hell?
Ok, this was sort of some extreme freaking out on my part. Swelling wasn't that bad.... urination is painful due to it being so concentrated... I guess I need to drink more water.
Went to the doc, he said I didn't have anything to worry about. No blood in urine, no hematoma, no bruising. I even specifically asked him about Peyronies Disease and he said that without any bleeding or bruising there is basically no chance of developing it. He told me this is a very common injury for young males and I did everything right in the situation. He recommended upping my dose of painkillers (with food of course), to take it easy, and to stop freaking out due to reading things on the internet. He told me my treatment was re-assurance and that I only get one penis per lifetime so take care of it, lol. What he said put me at ease. I have a feeling a lot of what was bothering me was just in my head. I think I'm going to stop visiting this forum for a couple of days to get this fear out of me.
QuoterichB posted,
I have a feeling a lot of what was bothering me was just in my head. I think I'm going to stop visiting this forum for a couple of days to get this fear out of me.
Sorry if we added to your anxiety. When I look through your posts I believe some of us were actually suggesting that you might not have Peyronies disease and to take it easy. Didn't meant to raise anxiety levels. If we were doing our jobs we would have done a better job of helping you stay level headed and calm through this. I hope it is nothing and hope to hear back from you in a few days.
Oh no no no no no don't take it like that, lol.
It's all me, I promise. You guys have been a great help. I am the kind of person that will spazz-out due to some strange thing that is different with my body. I pay close attention to my body whenever possible, almost too much. Sometimes it gets away from me. I used to be quite the competitive cross country runner in high school and with it came the need to pay attention every aspect of my health. A message board like this is a blessing. I just need time to get away and stop worrying so much.
Hey All,
I've been having to go to the bathroom very frequently, and finding that when I wake up, I have leaked some urine at night (sometimes during the day too).
This has been going on for awhile, but picked up a lot in the last 3 days. I just saw the doctor, and she told me to get off pentox and L Arginine for a few days to see if it is related.
Has anyone had these problems, or are they most likely coincidental? Also, do you think it is ok to get off the pentox for "a few days"...I've been on them for about 2 months.
Thanks for any answers/suggestions!
Jon
Jonny13,
This sounds like an overactive bladder issue, did you have this problem before starting pentox? Getting off pentox for a few days won't hurt you, but if you can finish the course you should probably try.
Comebackid
I doubt it is the Pentox or ALC.
I took 3 grams of ALC a day with no such issues and I had a radical prostatectomy for prostate cancer. If ALC tended to cause incontinence I think it would have affected me.
But, I cannot image it will hurt to stop it for 3 or 4 days to see.
Johny - I'd be inclined to say "coincidental" as I can't see how pentox and L Arginine can be causing this problem.
Thanks for the opinions. Yep, I think coincidental is it. Hopefully it goes away...quite annoying.
15 days ago I took my half-erect penis between the legs and bent it down, just a bit to lower an erection. Bad idea, I learnt some days later. I masturbated twice after that, that morning. I noticed a lump in the left side (which I have learnt it is a possible signature of penile fracture). Also, I noticed (and continue to notice if I have a hard erection), some feeling of something below my glans (maybe blocking blood).
Two days later, I notice a deviation of my penis to the right. How much does peyronie take to develop? 10 minutes? 2 days? I cannot belive it was peyronie from the beginning. I think it would take at least one day to develop.
Now I realize my penis is shortened, bent (I think because of post-traumatic peyronie disease). Erections are not complete (I can get an almost complete erection, still the glans is not filled with blood).
Went to Urgences 10 days later. They said too late to do nothing.
They only could diagnose peyronie from touching my not erect penis. A few days later a private urologist, told me that he could only see peyronie. He said if there was penis trauma, it was not too important, as he would have seen, even after 12 days the
remainings of an hematoma.
Now I realize that the glans is not fill in with blood (that was said by the private urlogist when shown the photographs).
But I guess I have the two problems: peyronie + penile vein rupture or maybe penile fracture. I have learnt that a vein fracture is not too painful.
there seem to be a lot of forums about peyrone, but none about penis fracture, which seems to be more rare.
I am desesperate these days. Any ideas on possible penile vein rupture?
atlantis,
sad to say but your story sounds too much like mine....and I'm in this game for 3.5 years already
my best advice to you would be to hit anti-inflammatories - 800mg ibuprofen/day, and take Pentoxyfilline (Trental is the generic). Also take L-Arginine and Vit E.. The faster you act - the better. EVERY DAY COUNTS. I would also order a FastSize or VED asap.
Hope you make it man.
I remember one of my old coaches telling me not to take ibuprofen daily for my knee and joint aches caused by accutane for acne when I was a kid. I think daily usage can cause liver damage. Just pentox daily would be safer, and I haven't seen one protocol that calls for ibuprofen daily...
Comebackid
ComeBacKid - I assume he means for maybe the first week or two, to try to get on top fo inflammation in the early days. You're right to dissuade people from daily use over anything other than the short term.
After 22 days of that bending of my penis, I am still trying to get a diagnosis.
The thing is that appart from the inflamation and the knot that is supposedly peyronie (at the right of penis), in other place a bit upwards a t the left, I feel something else, as if a vein would be blocked or something. I think there is something wrong with the blood flow in my penis, that is not peyronie.
The blood flow gets reduced at the middle of the shaft, and it is very hard for me to maintain erections. After erections, I feel something extrange in the middle upper part of my penis (dorsum), as if something would have made too much effort during the erection.
In the lateral of my penis there is some swelling of the lateral veins, the veins became thicker, like a cord. Maybe the flux upwards is blocked and it flows laterally (specially to the left)? When the urologist saw my photographs, he said that the base of the penis was fill in with blood flow, but the head of penis not.
The thing is that I remember some extrange feeling when masturbating, more or less half 20 minutes after the 'bad movement' bending my penis. I do not think it was peyronies in the begining, developing so quickly. I think some internal bleeding led to peyronie.
Any ideas?
Rupture of the deep dorsal vein? I think a complete rupture would have led to a lot of bleeding, and I would have seen my penis violet for days.
Penile vein thrombosis (mondor disease)? (I think this has still solution even one month after).
These two conditions are even more rare than penile fracture, and difficult to diagnose.
Can I still do something after 22 days? I am desesperate and anxious trying to understand what's happening and if I can do something. The 3 urologist I saw told me that they only could do something the first 24 hours, now I can only wait and see how things heal.
The saddest thing is that my life has been destroyed at 30 years old and medical science have a lot of things to do before they can try to solve the erectile dysfunction in people that have done bizarre manipulations with their penis, and that are only 1 in 100000. Now I have to continue my life as if nothing would have happened. This is not something you would tell to anybody.
PS: I am already taking vitamine E, as prescribed by the private urologist. Next week I will see another urologist.
Quote from: atlantis on April 08, 2009, 05:52:09 PM
Next week I will see another urologist.
That's certainly a good call, as it sounds as if the initial diagnosis was given via quick glance. Hopefully your new urologist will be able to help get to the root of this issue or at least be more thorough. Be sure to ask him about pentox, and take documentation relating to how it may be successful for peyronies.
My "our histories" post? : https://www.peyroniesforum.net/index.php/topic,31.msg19291.html#msg19291
I thought I should add one, as I'll no longer need to tread over old ground and can base comments relating to my own situation on this main history post. Any thoughts on where you think of progress or lack of will be over the next year? I know we're all individuals, but if somebody came to you with that exact history, what would you typically think was going to happen? My concern is that I'm still in an accute stage and that I have chronic symptons to look forward to in the coming year. Hopefully I'm wrong though.
newguy,
I just read your history. Since you have had Peyronies Disease for 13 years, I would think you are well past the chronic stage.......? Have you seen an urologist since your original diagnosis?
Quote from: lwillisjr on April 09, 2009, 12:07:19 PM
newguy,
I just read your history. Since you have had Peyronies Disease for 13 years, I would think you are well past the chronic stage.......? Have you seen an urologist since your original diagnosis?
Well, yes, from the initial bout many years ago I am certainly past that initial (acute) stage... but my issue now related to an injury that occured a little over a year ago, so effectively I'm possibly in a new accute stage. Visually my curve isn't as bad as it used to be, but it's "possibly" going to worsen over the coming year if this issue is sufficiently bad.
I really have had negative experiences with urologists, maybe because I'm not forceful enough. I've had to get pentox from online sources, which isn't ideal. I am heading to the states later in the year to see friends (so can hopefully can see dr levine while i'm there) , and I figure that in a 6 months or so, I should certainly be more aware of whether my situation is going to worsen (in terms of deformity) or settle down. I'm doing all that I can to keep on top of this, but if there are any dramatic or significant developments I might fast-track the US trip. I really only want to see Levine as I know that he has patient interests at heart.
I'm trying to stay hopeful, and until or unless my situation changes markedly for the worse I'll hopefully retain that mindset. Maybe I'll be lucky. If so, I will gently start back on the VED and maybe make more progress.. It's odd to have reduced a curve somewhat, but be worrying that things are going to get much worse anytime soon.
(I found this thread elsewhere: http://penisenlargementproducts.org/forum/x4labs-penis-extender-support/injury-after-weeks-t2421.html which pretty much sums up that if approached with too much intensity, even traction can be dangerous. Thats obvious I guess, but until something goes wrong, it's easy to fall into the mindset of thinking purely about 'progress' rather than safety and moderation. I notice a guest appearance by fellow forumite Hawk)
EDIT: Thanks for the PM lwillisjr
Quote from: newguy on April 09, 2009, 12:29:43 PM
I really only want to see Levine as I know that he has patient interests at heart.
Newguy,
About the only thing Levine can do different than other uros is give you a script for pentox. And pentox is no panacea. If it halted peyronies the script would be written by every uro, correct. Pentox, like many other substances discussed here, works "on paper" like vitamin c cures the common cold, "on paper."
Those were Levine's own words he said to me when I asked him, "will this stop the progression of peyronies."
I agree with the "mo" and the "McBaba" posters. Some posters have been posting here every day and not having much in the way of anything new to say. Tim has something to say about this so let's use tim as an example, Tim has been a member for exactly three years, that's 1095 days and he has 1287 posts. That means tim posts more than once a day. That is a lot of naval gazing as oscelot556 called it.
Yes overposting with shallow content "Does" dilute the quality of information here and if someone new is reading past threads to get caught up it is frustrating to scan through the "idle chit chat" posts to get to the quality of content posts. Gossip and rumors about ballet video started by tim, is soo not quality of content.
Here is a link to the forum rules. Read and we should have less idle chit chat and less ad nauseum posting. https://www.peyroniesforum.net/index.php/topic,6.0.html
If you daily chit chat posters just want to talk to someone, talk to your neighbor, talk to a friend.
I posted here in mid March and the same day I posted I then erased my post. Why? Because I recognized what I had expressed in my post was already expressed a dozen times over in dozens of other posts. Then Hawk sent me a private Email saying "the group would like to hear from me." Thanks Hawk. But I want to keep the treads here less cluttered so I will post when I have a breakthrough to speak of or at least something new.
THIS USER IS BANNED!
Skeptical - Nowhere have I stated that pentox will solve all of my problems or is some kind of wonderdrug. I'm simply taking it because I suspect it to have more of an upside than many other drugs. I don't view it to be a cure or able to stop any problem in its tracks. I'm doing all that I can to make the best of a bad situation, and that involves being supportive to others here and trying to improve my own general health. Your name is negative, your attitude is negative. If you have nothing to bring here but cut and paste duplicate posts and criticism of other members, then in the words of the rather morose but witty Morrissey, "why do you come here?"
Levine recommends the use of pentox, so he obviously thinks that its of some use.
I like Morrissey also. Have you heard the rumor he is celibate? Maybe Morrissey has peyronies also.
What do you want me to do kid, lie to you. Tell you your peyronies is going to go away. You have peyronies kid. This is not the type of disorder that you can tough it out and eventually it will go away. Saying that is not being negative that's being honest. And honesty is always positive.
I am positive and I am pro-active. I have been writting letters to my congressman/women to inform them about this disorder and requesting funding for new trials and research. I am not taking credit for this, I read someone else here say we should write the uros connected with universities/hospitals doing tgf beta trials. I have been doing so to inform the uros of the trials and request they should get their patients involved in trials for peyronies. My letters to uros are both the lick-it and click-it variety. Newguy, maybe a few letters sent by you, more letters from the members here will get some
positive replies.
Quote from: newguy on April 09, 2009, 06:57:08 PM
Your name is negative, your attitude is negative.
THIS USER IS BANNED!
Skeptical -
If you can put away your cystal ball for a moment it would pay to realise that neither you nor I know how my particular situation (or anyone elses... or your own) is going to develop. That is one of the troubling factors with peyronies. There is certainly a case for not getting caught up in slight variations of vitamins or meds and believing that they will solve all problems, but as stated that has not occured anyway. I commend your pro active attitude if in fact you actually do try to gain recognition for peyronie's on a local/national level.
In relation to this forum though, it pays to be polite, or at least to basically say "you've got your opinion, i've got mine, but good luck to you" instead of throwing around names and calling people "kid"or telling people that they must appreciate your point of view (because really, there is no such requirement). This is a private forum and ANY idea can be presented here, but not if you go on the attack or feel the need to prod or poke at anyone who doesn't agree with your attitude in its entirety. If you want to change the entire dynamic of how people communicate on an existing forum, you'd be better off creating your own, with maybe a more militant bent. There likely aren't many such forums, so you already have yourself a niche. There's nothing from stopping you from doing that. I would suggest that instead of wasting your time trying to shake things up, simply state an opinion and don't get into wars of words and slanging matches at every turn. It's really not that hard to get along with people. This isn't Rambo, you're on a peyronies forum.
All posts like this ^^^ are just wasting space. It shouldn't be our aim to get into protracted arguments that get us nowhere.
Anyway, in an attempt to move poast this, as stated I have added my history: https://www.peyroniesforum.net/index.php/topic,31.msg19291.html#msg19291
Feel free to comments or offer advise, encouragement... or harsh truths. Anything really. Anything to get us beyond needless arguing.
This is a interesting perspective and study on Peyronie's curvature, I'm getting my protractor out
http://www.urotoday.com/3351/browse_categories/peyronies_disease/correlation_of_degree_of_penile_curvature_between_patient_estimates_and_objective_measures_among_men_with_peyronies_disease__abstract.html
Tuesday, 07 April 2009
Division of Urology, Mount Sinai and Women's College Hospital, University of Toronto, Toronto, ON, Canada.
Among men with Peyronie's disease (Peyronies Disease), the degree of penile curvature has significant implications on psychological well-being, sexual function, treatment planning, and posttherapy evaluations.
The primary objective of the current study was to correlate patients' estimates of penile angulation with objective measures.
(i) Proportion of patients over- or underestimating their actual degree of curvature; and (ii) degree differences between patient estimates and objective measures of penile curvature. Methods. At baseline, patients with established Peyronies Disease were asked to provide a "best estimate" of their degree of penile curvature. Objective measures of penile angulation were then performed using standardized photographs and protractor-based measurement of penile curvature during full erection. Correlations were performed between patient estimates of penile curvature and objective measures of penile angulation.
Eighty-one men with established Peyronies Disease and a mean age of 52 years (range: 20-72 years) were prospectively evaluated. Mean duration of disease was 33 months (range: 6-276 months), and mean plaque size was 1.4 cm +/- 0.1 standardized error (SE). The proportion of patients with dorsal, lateral, and ventral curvatures was 39%, 57%, and 4%, respectively. Patient estimates of baseline penile curvature (mean 51 degrees +/- 3.1 SE) differed significantly from objective measurements (mean 40 degrees +/- 2.4, P = 0.001). A significantly higher proportion of patients overestimate their actual degree of penile curvature (54% overestimate, 26% underestimate, and 20% are accurate within 5 degrees, P = 0.002). Compared with objective measures, patients' estimates of degree of penile curvature differed by an average of 20 degrees +/- 2.2 SE.
Patients with Peyronies Disease tend to overestimate their degree of penile curvature. Objective measurement of penile angulation is necessary to accurately counsel patients regarding disease severity, recommend appropriate treatment strategies, and objectively evaluate outcomes following therapy.
Written by:
Bacal V, Rumohr J, Sturm R, Lipshultz LI, Schumacher M, Grober ED. Are you the author?
Reference:
J Sex Med. 2009 Mar;6(3):862-5.
doi:10.1111/j.1743-6109.2008.01158.x
Has anyone ordered Herazy's manual stretching video from Peyronie's Disease Institute? It's $50 and I think it's worthless, so maybe someone can let me know their thoughts...
After a week from my injury pain during flaccid has subsided but erection pain persists, but not that strong. The pain starts out as an ache and in full erection it turns into what I can only describe as "white pain." It hurts but not in a specific area, and can be ignored. Things seem to be healing nicely. Vit E and IB helped a lot but irritated the hell out of my stomach. I am optimistic.
richB - That's great news. Hopefully the improvements will continue. I'd stick with the IB for another wee, and maybe take pentox to be on the safe side (if you aren't already). You should probably use this incident as a lesson that you should be a littl more careful in future. I would mean this is a lecturing way, but rather that there would be nothing worse than having a "near miss", only for something similiar to happen again.
Hey Guys!
Maybe I'm posting it in the wrong section, but i couldn't find a suitable topic for this.
I've had this knotlike lump of about .5 inch stuck on my shaft of my penis, just below the head, and beneath the skin for about 14 months now. Sometimes this lump is palpable, but not all the time. Sometimes when I'm erect i can feel it, mostly in the morning, but sometimes i can't. When my penis is flaccid i can't really feel the lump.
I don't know if it's Peyronie's, since i don't have a curvature. But is it possible that i have Peyronie's? Is it normal for a Peyronie's scar to sometimes be palpable and sometimes not?
Thanks in advance for the information and good luck to you all!
Quote from: Ashlander on April 13, 2009, 08:27:44 AM
I've had this knotlike lump of about .5 inch stuck on my shaft of my penis, just below the head, and beneath the skin for about 14 months now. ... is it possible that i have Peyronie's?
Clearly none of us are going to say it is IMPOSSIBLE for you to have Peyronies Disease. If I assume you are under 50 years old, have no injury to your knowledge, and have no other symptoms that characterize Peyronies Disease, then the odds are great that you do NOT have Peyronies Disease. These are the odds however. Obviously a even a good urologist can not diagnose over the internet so we certainly could not. Just because it is likely not Peyronies Disease does not mean don't be concerned. There are things that are worse, as well as things that are not as bad but that need diagnosed and treated.
Find a GOOD urologist and make an appointment.
PS: if the lump moves with the skin rather than the skin moving back and forth over the lump then it definitely is NOT Peyronies Disease.
The other night I had an epiphany.
During sex one night with my girlfriend, something happened and my penis got bent way farther than it should downward. Now, I would have otherwise been concerned, but for a reason I am not going to disclose, I was busy comforting her afterwords to worry about what had gone on with me. Now over the next couple of days things were pretty sore, but this was masked due to I had developed a rash in the same area of injury. I had concluded that the pain was from the rash and NOT injury. Over the course of the next couple of days I had gone though many different ways to try and diagnose myself. Testicular torsion, epididymitis, anything that would be considered an infection and not penis injury. I specifically remember squeezing the area of what is now my scarring and being in immense pain, if only for a few minutes. I had a lot going on in school at the time, so I ignored it. I also continued to have sex about two weeks afterwords. I had completely and utterly forgot about this incident.
The odd part about this is things didn't pan out characteristically of a penile injury. I remember one time I was having sex, she was on top, and everything was fine. The moment I got up I was in terribly immense pain on the left of the base of my penis for about 10 seconds until I bent over, and the pain disappeared. Odd. I honestly can't explain anything that has gone on in the past months following "injury."
Nothing makes sense. Nothing comes together. I do have what might be considered "plaque," but it is more of thin scarring and not nodule like. My penis doesn't fill up the same way during erection like it used to. Yes there is a bend, but it is not a result of any noticeable scarring or nodule. It isn't an immense bend, maybe 5-8 degrees more than my original one, but it's there. The left cavernosum is not as full as it used to be. Nighttime erections are not as rigid. I don't get it. I feel like I have to draw the blood into my penis to get a full erection.
I took Cipro for two weeks, and I know there has been suggestions about it in other threads. My symptoms, did, and I am not exaggerating, improve while taking Cipro.
I need to see a urologist again. I need to be correctly diagnosed and treated. I need to see a GOOD urologist, one that will actually care about my problem. I am confident my problem might be very Peyronies Disease like, but not Peyronies Disease. Maybe it can be fixed. Maybe it will resolve in time. Who knows. The only thing I know is that I want answers.
I have been examined many times. I do not exhibit obvious Peyronies Disease symptoms. I find it odd that I might develop such a problem considering I have always, always been considered extremely healthy in the eyes of my doctors. The only thing that would effect my immune system is that I was about 6 weeks premature. Which also leads me to another possible conclusion. Maybe if I have developed Peyronies Disease, it could be a symptom of a greater problem. I have always healed well (and quickly, in fact) in times of physical distress. I remember when I broke my leg when I was in jr. high. I had to get it re-set a week later due to me falling onto it. The doctors had to re-break my leg because it had already healed enough to cause problems.
Things since the initial injury have not gotten that much better and I can't tell if they are getting worse, which I will take as a good sign. I know that something is going on here, and I am determined to find out.
RichB
We have discussed here previously (at length) the implications of not having a palpable nodule or scar. Essentially, it means nothing more than that the area that is abnormal in your tunica is too small or thin to be felt by human fingers. That does not mean it is non-existent.
Recently published data show that the tunica of men with Peyronie's Disease is abnormal, even in areas other than the palpable plaque. At the time of surgical repair, the docs took out the scar and also took small punch biopsies of nearby normal-appearing tunica. This turned out to be abnormal in collagen content and structure. So it is not surprising that what is leading to your new bend is not easily felt by a couple of fingers (which are not going to be as sensitive as light microscopy at finding abnormalities!).
Everything you have said suggests that you have Peyronie's Disease, and that it is affecting your penile shape and erectile function. Keep on trying to find a doc who will not go with simplistic answers (ie "I can't feel it so it must not exist") and instead with someone who will take the problem seriously.
Tim
Richb
I agree with Tim. You need to find a doctor that specializes in penile health or a Male Sexual Function specialist. They are hard to find. You do not need a general practice urologist because he does not have all the skills you need. Been There Done That!!!
Let us know what area you are in, some of us may know of a great doctor.
Jackp
I need to get on Pentox. I live in Cleveland right now, and my home is about an hour SE of that. Hanoverton, Ohio.
RichB
In your area Dr. Montague at Cleveland Clinic has an excellent reputation. You can go to the Cleveland Clinic web site and look up his bio. I know of some that he has helped.
Jackp
Skjaldborg, in the "Our Histories" section, you said:
Quote from: Skjaldborg on April 17, 2009, 05:41:06 PM
Age 30
Very first symptoms In early 2009 I noticed a tingling sensation on the top middle part of my penis after sex with my wife. There was NO popping or pain or loss of erection and nothing seemed out of the ordinary. The tingling sensation went away after a few hours. Approx 1 month later, I noticed an hourglassing shape in the middle of my shaft and some discomfort during erection....
The urologist gave me a full examination and explained the condition in detail. He said to take it easy for 3 months, try to forget about it and take Motrin everyday to reduce inflammation. He was very supportive and said that at this stage (acute) we will have to wait and see what happens...
Psychologically this has been very difficult. My sex drive is way down and I'm worried that every time I get an erection that I'm making it worse. I am lucky that my wife is very supportive and we have discussed the situation openly....
Erections will not worsen you situation but likely help maintain penile health. Wait and see is not a good option. Now is the time to be proactive. Read the "child boards" on this forum. They will give you an overview of the issues. Posting is done here on the main forum, not in the child boards.
Good luck
Skjaldborg,
You'll find that pentox is a treatment of choice on this forum. Get on it ASAP!
Hawk and Jonny 13,
Thank you. I will ask my Urologist about Pentox.
I have skimmed through some of the threads here about Pentox but am surprised that the Urologist did not recommend it. He appears active in organizations dealing with penile health so it is unlikely that he is completely unaware of it. He seemed upbeat about the lack of severe trauma and absence of large scar tissue. I will push him a little more on this.
Thanks again for the suggestion.
-Skjald
Skjald -
Also consider L-Arginine, Full Spec Vitamin D, Viatmine E, Maybe acetyl-l-carnitine, possibly even viagra.
Dr Levine suggests that starting light traction early could be of use too, and many have demonstrated that the VED can be of use too. Anything in moderation can help. Moderation is the key, and hitting this from different angles can't hurt. You've caught this early, so take advantage of that :).
Question..
I think I've read here of others noticing this...
A couple of times when it's taken me longer to get fully erect, I notice a larger "inside curvature" on the right side while I'm semi-erect. I have a dent at the top 1/4 near on the right side...but completely disappears quickly as I get full erect.
I seen this a few times over the last 4 months.
-cowboyfood
Cowboyfood....i was just about to post what you said. I am 22 year old male. I have i guess what you would consider a severe curve while semi flaccid, getting erect, and a dent with a lump above it under the penis head on the left side. I would say its between 30-90 degrees depending on how erect i am. However when i am fully erect its barely noticeable. But i do mean fully erect, usually it involves high stimulation and touching/straightening out the curve with my hand. Even the slightest lost in an erection results to some degree of curve. Anyone know what is going on. The doc said peyronies...and started me on Vitamin E and Colchicine. My penis seems to be offcenter also compared to before...whether its in the erect or flaccid state? Will the flaccid state be a prelude to my erect state?
I don't think it it means that...but, I don't know. That's why I posted the question, I am very uninformed, and only know what I've read here...but, I think I remember reading one of the "veterans" posts that said this is not unusual, even for those not effected with a scar condition.
I have a second appt w/ a urologist (well, their PA) that does a lot of work with Peyronies Disease in Atlanta in a few weeks and I'll (try) remember to ask.
My first uro I saw last week didn't question my partially erect state, he just wanted to know if I had pain and if the erect shape caused a problem for intercourse.
per my last post!!!
I didn't mean to imply that I've read everything and know everything that is on this board, and therefore uninformed!!!
I meant, the little I've read here has greatly increased my knowledge of the condition, but that in know way makes me remotely knowledgeable about the condition.
This forum obviously provides us fantastic information that we can relate to doctors...Even if they are not as "informed" as some on the board, they are trained on how to use knowledge and their specialty. So, I wouldn't assume that a uro that may not be as up to date with the latest information as many on this board, I presume they are trained on how understand the body.
that being said, try to find a uro in your area that has a demonstrated interest in this condition.
I've read several cases recently were one's curve is worse while in the semi-erect state and then seems to straighten out once erect. I'll offer my opinion of what may be happening, but my opinion only.
It would make sense to me that there clearly is some fibrosis or Peyronies scarring present. But that it is still somewhat elastic, but not as elastic as the surrounding tunica tissue. So as the erection process begins the curve becomes evident as the Peyronies Disease scar is that last area to stretch. As the erection becomes firmer and puts more tension on this scaring, it does finally stretch some so that curve relaxes and is not as noticeable.
Now, will this always continue this way, will it get worse? This would be impossible for anyone to answer. Peyronies Disease is so unpredictable in how it will manifest itself in the stable condition in each one of us.
Les
Les - This pretty much mirrors my view of it. My only other thought was that for those with a semi erect curve, it would probably be an ideal time to begin traction or VED, as if they are able to tip the balance in a meaningful way at this stage, maybe it can make a big difference.
Does anyone else on here experience a double stream when they are urinating? I was experiencing this before the Peyronies Lump periodically, but honestly i can not remember how long its been going on....Now that the lump has set in i have the double stream everytime i pee, no pain though. I have been to two uros and neither mentioned anything about a urethra stricture...any ideas?
What you described in your post is exactly how I am, with the semi erect bending, and I agree, it appears peyronies plaque is present but still able to stretch some, just not as good as normal tissue. This could mean you have peyronies plaque mixed in with normal tissue. I would guess it could keep getting worse myself. This is why I take pentox to try to stop this and heal any of the damaged tissue I can.
Comebackid
Do you experience a double stream when going to the bathroom? Also the base of my penis is swollen. Are you experiencing this also?
I was experiencing some strange pain on the top of my penis below the head recently, decided "what the heck, lets try it" on some back stretching, the pain is now gone. This is strange.
All,
per my Peyronies Disease history, I noticed a dent and about a 15-20 degree curve from the dent (located at the distal portion, about an inch below the glans) since last december. My first uro diagnosed a scar tissue where the dent is located.
Anyway, I've noticed over the past many weeks I have some "discomfort" in my bowels, the area near my bladder, the base of my penis, the 'area' in front of my bladder right before you get to the penis, my rectum...all that area.
The discomfort is almost like a constipation...but can also be "achy" in any of these areas.
Any thoughts?
Cowboyfood
Quote from: cowboyfood on May 06, 2009, 03:07:16 PM
All,
per my Peyronies Disease history, I noticed a dent and about a 15-20 degree curve from the dent (located at the distal portion, about an inch below the glans) since last december. My first uro diagnosed a scar tissue where the dent is located.
Anyway, I've noticed over the past many weeks I have some "discomfort" in my bowels, the area near my bladder, the base of my penis, the 'area' in front of my bladder right before you get to the penis, my rectum...all that area.
The discomfort is almost like a constipation...but can also be "achy" in any of these areas.
Any thoughts?
Cowboyfood
I found this post from another board member about "pelvic pain" help...
http://www.pelvicpainhelp.com/
cowboyfood
Sounds like a prostate problem. Do you have BPH?
Jackp
jackp,
wow, now I'm get to look ignorant...jp...I don't know what that is.
but, I've got a uro appt next week...Old Man said the same thing...I hate getting old sometimes....but, I look young!
whats bph?
Cowboyfood
Thought I'd jump in... not trying to beat you to the punch jack, but here ya go, cbfood...
Benign prostatic hyperplasia (BPH) also known as nodular hyperplasia, benign prostatic hypertrophy (technically a misnomer) or benign enlargement of the prostate (BEP) refers to the increase in size of the prostate in middle-aged and elderly men.
Hey cbfood, don't feel bad. I'm 58 but don't look a day over 143 ;D
Quote from: Angus on May 07, 2009, 12:08:49 AM
Thought I'd jump in... not trying to beat you to the punch jack, but here ya go, cbfood...
Benign prostatic hyperplasia (BPH) also known as nodular hyperplasia, benign prostatic hypertrophy (technically a misnomer) or benign enlargement of the prostate (BEP) refers to the increase in size of the prostate in middle-aged and elderly men.
Hey cbfood, don't feel bad. I'm 58 but don't look a day over 143 ;D
After everything I've done with my life, now that I am familiar with the term "benign prostatic hyperplasia", I feel officially grown up.
Well, I will explain this to the uro on Tuesday. Now, I have a list! Some suggested it might be "stress" related. I won't bore the board with my story...but, to make a long story short...I've voluntarily put myself under a lot of stress with a career change; which involves law school and living like an indigent at times...plus a very hectic move in between fall/spring semesters last december to a school in Atlanta.
Anyway, I'm so thankful to have this wonderful board to educate me on things I took for granite for so long...my health.
CF
Angus
The only thing I disagree with about your statement about BPH is that it can strike at any age not just older gentlemen like our selves. ::)
I'm 66 now but I will never forget my first bout with BPH at 35. Back then it took over a year of weekly DRE's (Prostate Massage) and antibiotic's to clear it up.
The one thing I found that helps is a couple of glasses of Cranberry Juice daily. It is an acquired taste so I drink it Ice Cold.
Jackp
Just a side note. Cranberry concentrate in pill form IS available and it works wonders and avoids the sugar intake usually associated with cranberry juice. I currently take one of these a day to keep uro problems at bay. - George
Quote from: jackp on May 07, 2009, 06:45:05 AM
Angus
The only thing I disagree with about your statement about BPH is that it can strike at any age not just older gentlemen like our selves. ::)
I'm 66 now but I will never forget my first bout with BPH at 35. Back then it took over a year of weekly DRE's (Prostate Massage) and antibiotic's to clear it up.
The one thing I found that helps is a couple of glasses of Cranberry Juice daily. It is an acquired taste so I drink it Ice Cold.
Jackp
Jack, I think you had prostatitis at 35. Prostatitis can be either bacterial or non-bacterial. BPH on the other hand is an enlargement of the prostate that develops gradually over time and that does NOT clear up.
ggg953:
Sorry, cannot answer your PMs. Your inbox is full and will not accept any further PMs at the moment. Go into your inbox and delete some so that you can receive new ones.
OM
I have read several post regarding Urethra Strictures. Very curious about this. I experience a double stream when urinating SOMETIMES, along with a swollen base of penis(in the scrotum region, not the part used for sex). Also i can not get fully erect with out helping it along......and certain parts of my urethra do not swell up like usual when having an erection along with what appears to be a turnicant running across the urethra causing an indentation. Are these signs of Peyronie? I have talked to two doctors and posted this on this board with NO answers....Is no body else experiencing this? Seems unlikely? The double stream and inability to become fully erect without using my hand or someone else help? While fully erect its obvious that i have a peyronie lump at the top...but what about the other things ive mentioned?
Hi Starting2looseHope,
your case has some resemblances to mine.
I have a supossed peyronie lump at the right base of the penis, and a swollen area in the middle left of my penis, which feels like some soft burning, specially after eerections, different to the mild pain produced by the supposed peyronie lump. I also have difficulties getting a complete erection.
A few days ago I went to yet another urologist. This one told me that Peyronies disease in young people (I'm 30) are often produced by/related to prostatitis (inflamation of the prostate), and if the prostatis is treated maybe the peyronie lump dissapears. This doctor even was not interested by histories of trauma (he didn't asked me about it). He was more interested in symptoms with the urinary stream, of which I have some mild ones, like burning while urinating. He made me a rectal examination, after which some days later I still have pain, and he told He gave me CIPRO 500 tablets for 10 days (it is worth looking at the CIPRO 500 page in Wikipedia, its secondary effects, and specially on the section on prostatits). This treatment would only cure 5% of prostatitis, so I think it will not resolve my problem, which I suspect is type III prostatitis related to stress. He also spoke to me about having surgery (prostate plastia) to remove part of the prostata (I am really frightened about this).
What you say about double stream might be related to prostatitis. In any case, I do not know if to believe this last doctor. I am getting quite uncredulous on doctors, and I have seen no reference in the scientific literature about the relationship between peyronies and prostatitis in young men.
Regard to sexual activity, I think in a case of prostatitis to have sexual excitement without ejaculating.
So, have a look on the prostatitits page in wikipedia.
Do you have any history of trauma/bending movement?
Has anybody else symptoms similar to prostatitis (burnig feeling when urinanting...)
Keep us informed on what the doctors say to you.
Quote from: Starting2looseHope on May 10, 2009, 06:33:23 PM
I have read several post regarding Urethra Strictures. Very curious about this. I experience a double stream when urinating SOMETIMES, along with a swollen base of penis(in the scrotum region, not the part used for sex). Also i can not get fully erect with out helping it along......and certain parts of my urethra do not swell up like usual when having an erection along with what appears to be a turnicant running across the urethra causing an indentation. Are these signs of Peyronie? I have talked to two doctors and posted this on this board with NO answers....Is no body else experiencing this? Seems unlikely? The double stream and inability to become fully erect without using my hand or someone else help? While fully erect its obvious that i have a peyronie lump at the top...but what about the other things ive mentioned?
Quote from: atlantis on May 11, 2009, 04:58:06 PM
A few days ago I went to yet another urologist. This one told me that Peyronies disease in young people (I'm 30) are often produced by/related to prostatitis (inflamation of the prostate), and if the prostatis is treated maybe the peyronie lump dissapears. This doctor even was not interested by histories of trauma (he didn't asked me about it). He was more interested in symptoms with the urinary stream, of which I have some mild ones, like burning while urinating.
What is his basis for connecting Peyronies Disease to protatitis?
Hi all. I'm a 19 year old living with Peyronie's Disease, and I acquired the disease when I was about 13 years old after trauma occurred. I spent most of my teenage years embarrased by the disease's effects, so I never told my parents about it...until now.
I just recently went to a urologist, and within 15 minutes, without hesitation, he told me that he can set up surgery so the scar tissue can be removed, but my penis will be shortened. For the past few years, I've been thoroughly researching Peyronie's Disease, and there are a few things that bother me about my visit to the urologist.
#1 He doesn't specialize in Peyronie's Disease
#2 He was quick to offer surgery (and I realize there are various surgical options, not just the one he offered)
#3 Many online sources I read say that surgery should only be used as a last resort
Based on what I've told you, does the situation I'm in sound good, or should I seek a urologist that specializes in Peyronies Disease? Any other words of wisdom?
Hi Smitty
It's good that after suffering in silence you are now being proactive in looking into the options. You are still very young and as such I would say that getting a second opinion from a specialist would be a very good idea, especially since the urologist doesn't specialise in peyronie's disease. Surgery would no doubt depend on a number of factors, such as whether your disease is stable (this seems likely), and the extent of the deformity. Some members of this forum have had success with VED for instance, other studies suggest that traction can be useful. Can you tell us more about the extent of the curve?
Quote from: newguy on May 12, 2009, 01:30:33 PM
Hi Smitty
It's good that after suffering in silence you are now being proactive in looking into the options. You are still very young and as such I would say that getting a second opinion from a specialist would be a very good idea, especially since the urologist doesn't specialise in peyronie's disease. Surgery would no doubt depend on a number of factors, such as whether your disease is stable (this seems likely), and the extent of the deformity. Some members of this forum have had success with VED for instance, other studies suggest that traction can be useful. Can you tell us more about the extent of the curve?
The curve is a downward one that I would describe as medium-bad. Before I let my parents know about my Peyronies Disease, I was definitely considering buying a traction device. They cost quite a bit, but I was desperate to cure my Peyronies Disease without anyone knowing about it. After more online research though, I found some sources that claimed traction devices are just big money makers that don't necessarily work.
I have a few general questions though.
#1 If I would get surgery that results in shortening of the penis, exactly how much shortening are we talking about? 1/2 inch? 2 inches? I'm guessing it depends on how much scar tissue is present.
#2 Since the penis is cut open during surgery, does it leave any scarring?
Smitty - You're right to be suspcious of the wide range of so called peyronie's "cures" of there. I do think that it has definitely been used by some people to decrease the curve, but it can on occasion cause further injury. Many people have had success with VED therapy, and I'd certainly say that it's worth a shot, and when used correctly is very safe. None of these methods are quick fixes though and it doesn't pay for people to see them as such. As for surgery, if you do get a second opinion from a peyronie's expert, it may be the case that you are suitable. There are a few members here that have gone through surgery and as such they might be able to enlighten you as to the process, what to expect, recovery times etc. length lost will likely depend on the extent of the curve.
Smitty
Before opting for surgery go to the VED thread and follow the 26 week protocol. It will help in size if you have surgery. The VED also helps keep the penis healthy.
What surgery did you doctor recommend? How many of these surgery's has he done? What is his background in treating peyronies?
An indication of loss of size would be if you crook your finger to the curve and look at the short side that is probally what you will have after surgery.
Jackp
Quote from: Smitty on May 12, 2009, 01:18:44 PM
Hi all. I'm a 19 year old living with Peyronie's Disease, and I acquired the disease when I was about 13 years old after trauma occurred. I spent most of my teenage years embarrased by the disease's effects, so I never told my parents about it...until now.
I just recently went to a urologist, and within 15 minutes, without hesitation, he told me that he can set up surgery so the scar tissue can be removed, but my penis will be shortened. For the past few years, I've been thoroughly researching Peyronie's Disease, and there are a few things that bother me about my visit to the urologist.
#1 He doesn't specialize in Peyronie's Disease
#2 He was quick to offer surgery (and I realize there are various surgical options, not just the one he offered)
#3 Many online sources I read say that surgery should only be used as a last resort
Based on what I've told you, does the situation I'm in sound good, or should I seek a urologist that specializes in Peyronies Disease? Any other words of wisdom?
Smitty,
1. Are you able to achieve and maintain an erection?
2. What is your degree of curvature?
There are at least three different surgical procedures. I've had surgery and it was successful. I lost about .5 inch in length after all was said and done. I know two others who also had the same surgery procedure that I did, one also lost .5 inch, and the other person said he noticed no loss of length at all. Feel free to email me. I'm happy to share details of the surgical procedure.
Smitty, there are published data that say that downward curves are harder to fix well surgically.. I would vigorously explore other options first.
You have taken an enormous step in asking for help and being honest with your parents. They will love you and support you, I am sure, in making good choices - how great that you do not have to suffer in silence any longer!
Tim
the pain has returned - F$%K I am so so so over this disease - i am really getting pissed off with this F#*%ER - constant pain for the past 2 F**KING years!!!!
Quote from: Hawk on May 11, 2009, 09:35:38 PM
What is his basis for connecting Peyronies Disease to protatitis?
I do not know very well, I have not seen any references in scientific journals linking both things, and that doctor was from the moment he saw the photographs of my erection asking me about the symptoms of prostatitis. He did not even asked me about trauma.
In my case it would make sense, as I have some of the symptoms of prostatitis (pain after ejaculation, burning feeling when urinating...). From what I read in the forum some people have some of the prostatitis symptoms (it suffices to write prostatitis in the forum searchbox).
Has anybody else had Peyronie's disease together with prostatitis?
Iceman - Sorry to hear about that. As you were without pain for several months, it sounds like something has aggravated your condition. I suppose as peyronie's sufferers we are more already in a weakened condition to an extent, and as such these things sometimes occur, even when we don't do anything that would typically we seen as risky. All I can suggest is that you stick with pentox and vits, exercise and a healthy diet. Beyond that we are playing a waiting game. The xiaflex trials will hopefully be positive. Time will tell.
newguy, jackp, lwillisjr, and Tim468,
Yeah, after researching the disease for a few years now, I was quite surprised whenever my first urologist visit resulted in the option of surgery being thrown into my face within 15 minutes. All I know is...I am 19 years old and I hopefully have a full life ahead of me, so I would really like this disease cured once and for all. In addition to my Peyronies, I've had a handful of other problems, both physical and mental. In a year, I'm supposed to move away and do some training for my college degree in Radiology. I would LOVE for ALL of my problems to be fixed by then, b/c I feel like my issues have been keeping me from a happy life...and all I really want in life is happiness.
I appreciate all of your support and advice. I'm definitely glad I found this forum while doing a Google search. Anyways, my parents actually aren't as supportive as I thought they'd be. They are very ignorant to my situation, and they are trying to force decisions on me, decisions that I should be making on my own.
lwillisjr I'll contact you within the next few days. Thanks.
Anyone up for a little humor? My urologist asked me if I have any pain during intercourse, and guess what I told him? I've never had intercourse. He was shocked... 19 years old and still a virgin? He asked me why...and I told him it was b/c of the disease, which was embarrassing for me. The good news is I'm not embarrassed by the disease anymore.
Oh, and one more thing: Since I got Peyronies Disease during puberty when my body/penis was still maturing and growing, do you think some of the Peyronies Disease effects are permanent? It seems like the circumference of my erection is kind of thin/narrow. Will surgery help this, or is it something I'll just have to live with?
thanks for the support guys - sometimes this can really overtake you - the pain comes and goes im afraid - im taking all vits and pentox but have stopped VED usage for the past 2 weeks due to living arrangements as itshard to duck into the toilet for privacy for a quick pump - im moving back home tomorrow and will be back on the ved - maybe this may help - oldman - your words are ticking over in my mind - ( really agree with what you said - the mind is very powerful)
Quote from: cowboyfood on May 07, 2009, 12:20:33 AM
Quote from: Angus on May 07, 2009, 12:08:49 AM
Thought I'd jump in... not trying to beat you to the punch jack, but here ya go, cbfood...
Benign prostatic hyperplasia (BPH) also known as nodular hyperplasia, benign prostatic hypertrophy (technically a misnomer) or benign enlargement of the prostate (BEP) refers to the increase in size of the prostate in middle-aged and elderly men.
Hey cbfood, don't feel bad. I'm 58 but don't look a day over 143 ;D
After everything I've done with my life, now that I am familiar with the term "benign prostatic hyperplasia", I feel officially grown up.
Well, I will explain this to the uro on Tuesday. Now, I have a list! Some suggested it might be "stress" related. I won't bore the board with my story...but, to make a long story short...I've voluntarily put myself under a lot of stress with a career change; which involves law school and living like an indigent at times...plus a very hectic move in between fall/spring semesters last december to a school in Atlanta.
Anyway, I'm so thankful to have this wonderful board to educate me on things I took for granite for so long...my health.
CF
I saw the uro's P.A. the other day and he check out my prostate, said it was normal. I mentioned the bph (well, I pulled out the pamphlet they had on the wall entitled bph) and mentioned my symptoms, but he quickly dismissed bph... I think my come back was "are you sure?" (pretty lame). He said yes.
CF
Quote from: Smitty on May 14, 2009, 01:00:36 PM
Yeah, after researching the disease for a few years now, I was quite surprised whenever my first urologist visit resulted in the option of surgery being thrown into my face within 15 minutes.
lwillisjr I'll contact you within the next few days. Thanks.
Anyone up for a little humor? My urologist asked me if I have any pain during intercourse, and guess what I told him? I've never had intercourse. He was shocked... 19 years old and still a virgin?
Smitty,
Feel free to email me or PM through the forum. Would be happy to talk by phone as well if you like.
Be proud of your virginity. Sex isn't a conquest of "how soon can I do it". Right girl, right time, and it will happen...... Peyronies or not.
As far as your urologist getting to the surgery suggestion so quickly... keep this in mind. It is the opinion of some urologists that drugs, traction, or VED therapies for Peyronies Disease are only effective during the first 24 months or so. Once the plaque has stabilized it can begin to calcify. Once this happens then surgery (or doing nothing) become your few choices. So depending on your history and when your Peyronies Disease occurred, may explain why your uro got to the surgery option so quickly.
Are you sure BPH does NOT clear up? I'm worried now. What about the meds that they prescribe for it? Don't they help. My uro didin't tell me that i would have it forever and that there is not a cure.
bodoo2u
You don't want to hear this but BPH is only controlable not curable. Mine started over 35 years ago and in that time I have had 2 TUPR (surgical reduction) and taken some of the meds.
I had been taking Saw Palmetto because of the side effects of the meds and in early 2008 decided that after 10+ years to quit. About 10 days ago I had to have a bladder scope and the doctor remarked that my prostate was enlarging again and wanted me to start taking meds. I politely told him NO that I did not like the side effects and would start back on Saw Palmetto.
Saw Palmetto takes a few weeks to work but it does work. I get mine from GNC along with zinc, copper and other vitamins for men over 50. I tried the big box store brands but they just did not have the quality. Also a glass of cranberry juice every day helps.
Hope this helps.
Jackp
Hi,
Any of you guys with BPH or prostatits started having those problems at the same time as the appearing of 'La Peyronie'. The last urologist I saw told me that if the prostatitis would get cured in a few months, 'La Peyronie' would dissapear. All what I have found is some posts two years ago in the forum by Phil who said that both things appeared at the same time, and at the time he stopped taking the medication for prostatitis, Peyronie disease got much worser.
Any thoughts on that?
Thanks (for nothing) Jackp ;D
I'm glad you and a few other set me straight. I have been saying to myself for years that "I'm gonna take this Saw Palmetto like I should, every day, and be rid of this mess." I guess I've only been fooling myself, almost like I have been doing with Peyronies Disease.
Bodoo
I've posted this before but want to put it out again in relation to Prostatis and Peyronie's.
Prostatis is an incorrectly coined term for what today is being termed Chronic Pelvic Pain Syndrome which has nothing to do with the Prostate. Prostatis (bacterial infection) occurs in approx 5% of cases where the symptoms of unrinary difficulty, painful ejaculation etc are present. The other cases are increasing accepted as a result of pelvic floor muscle disfunction due to stress and yes this is where the Peyronie's connection comes in. You will probably be unaware that you are tensing your muscles and this is going to be a hard one to reverse as no pills or surgery can help but you need to learn to relax them and this will take time. Obviously get checked out for Prostate infection, stones, blockages, enlargement but if your Urologist does not find anything then its likely CPPS is what you have.
Hi UK,
thanks for the message. What the last doctor told me was that maybe Peyronie and 'prostatitis' were associated, and curing prostatitis may make Peyronie's dissapear. He gave me the CIPRO 500 for 10 days, and even suggested surgery for the prostate, which makes me frightened. In any case the 'tensing muscles' history fits in my case, as I have had anxiety and stress problems for many years.
Hi All,
Stopped by to say hello. My sex life is still almost non existent. I check in now and then hoping to see if a 'cure has been discovered". Maybe next time.
Regards,
Shortie
Atlantis, I strongly recommend reading "A Headache in the Pelvis" by David Wise.
It will give you a lot of answers.
Yes, but the doctors do not seem to like the idea of stress producing those symptoms and continue to give antibiotics.
Quote from: UK on May 22, 2009, 02:45:02 AM
Atlantis, I strongly recommend reading "A Headache in the Pelvis" by David Wise.
It will give you a lot of answers.
Atlantis, i have come to the realization that my prostatitis is really chronic pelvic pain syndrome. i also have Peyronies Disease and i think getting Peyronies Disease started and continues the cpps symptoms> i have had pelvic floor testing and exercises and they seem to help> the wikipedia site on cpps has some good info. i guess i've learned to live with both. hoping to get xiaflex one day.
Phil, I would suggest that this is really just another inflammatory syndrome that is auto-immune at its root, and thus related to Peyronie's in this way. I was getting treated for urinary tract problems for years only to eventually discover that most of it was inflammatory and not bacterial. The only issue with this that is of concern is that chronic inflammatory syndromes can foster or hide bacterial infections. This makes it really important to try to keep them under control. - George
Hunter,
I read your very thorough and well written post in "Our Histories"
Quote from: Hunter on June 01, 2009, 02:16:32 PMHunters history and background with Peyronies Disease
Since that "Our Histories" area is reserved only for Histories and not two way conversation I thought I would reply here and link to your story.
I want to welcome you to the forum and thank you for contributing by already posting. I hope you find both the information and support you seek.
Regards
Hawk
Is it possible to be able to get normal, regular, stimulated erections in the daytime but no night time erections?
I know that if you get night time erections then most doctors say you can get them in the daytime, but I have been wondering if the inverse is true, because I may have that.
How much of an effect does irregular night time erections have?
RichB - As the mechanism between the two differs, I certainly think that it's possible to be able to gain stimulated erections in the day, but partially or completely lack night time erections. My night time erections are currently irregular, whereas day time erections are not as much of an issue for me.
My belief is that we should try to replicate what would typically occur in males without sexual health problems. Therefore lacking night time erections is not ideal by any means, probably makes fibrosis more likely, and can be indicitive of ongoing sexual health issues.
Thankfully viagra and co can be helpful for day and night time erections, and Trazodone is apparently a cheap and powerful drug with the ability to induce nocturnal erections at low doses. These substances should allow people to cater an approach which suits their particular needs.
Use of the VED has also been shown to reduce erectile dysfunction and fibrosis in those following penile surgery. Of course peyronie's is 'a different kettle of fish', but I believe that it may possibly discourage erectile dysfunction in those with peyronie's, which in combination with the oral treatments is likely a good multi pronged approach to dealing with lack of erections.
First, I know that this disease sucks no matter what shape, size, form, degree, stage, etc. But, I am wondering if having a plaque in one area is worse than another? I am scared I will slowly lose length over the next year. My injury happened a little over a month ago and I have seen literally no improvement.
In other news, My family doctor prescribed me to cymbalta (antidepressant) after telling him about my history struggling with anxiety. I don't think I am going to take it because I doubt it is good to take with L-Arginine, Vitamin E, and Multi V daily. I took a sample today and it made me feel like crap. All i wanted was xanax but of course, doctors dont like writing xanax scripts for 23 year olds. He did give me a 0.25mg xanax prescription.....wow, how worthless.
Men with Peyronie's disease usually seek medical attention because of painful erections and difficulty with intercourse. Since the cause of the disease and its development are not well understood, doctors treat the disease empirically; that is, they prescribe and continue methods that seem to help. The goal of therapy is to keep the Peyronie's patient sexually active. Providing education about the disease and its course often is all that is required. No strong evidence shows that any treatment other than surgery is effective. Experts usually recommend surgery only in long-term cases in which the disease is stabilized and the deformity prevents intercourse.
Your statement, "No strong evidence shows that any treatment other than surgery is effective" indicates that you haven't read much on this site, not even the Child Board. Please do so before posting again. Pay special attention to the VED thread.
There is strong indication that Jeff Turner may be a SPAM account to push a commercial site. If so he will not be here long. If he is not, then we welcome him and Mick's advice stands.
Quote from: Hawk on June 11, 2009, 12:12:37 PM
There is strong indication that Jeff Turner may be a SPAM account to push a commercial site. If so he will not be here long. If he is not, then we welcome him and Mick's advice stands.
A big thank you to Hawk, Old Man, Angus, Mick, and newguy for monitoring the forum and, IMO, appropriately remedying any illegitimate posts.
IMO, although there is a legitimate interest in allowing guests and members to post information, there is, IMO, another legitimate interest in identifying or removing posts not made in line with the forum's policies and expressed intent because these posts can cause high anxiety and discouragement with many forum members and guests, especially those that are in their beginning stages of trying to understand the condition. I believe this is true because of my own, personal experience in using our forum. In these situations, I believe the latter interest significantly outweighs the former interest.
As a mentioned to Old Man in a private message, posts and naked assertions that appear to be made with mere animus should be subject to removal at the discretion of the forum's moderator in order to serve the interest of eliminating unnecessary anxiety and discouragement amongst the forum's readers, regardless of the post's content.
IMO, any legitimate and relevant information removed by the moderators is more likely than not to be posted in the future in the appropriate manner.
CF
There was a post elsewhere concerning whether it's good to stretch the penis (via erections) following an injury. I found a link to this study on the forum and thought I'd remind people of it again here because I managed to miss it first time around:
https://www.peyroniesforum.net/index.php/topic,25.msg10695.html#msg10695
Another study I found involving stretching tissue and the inhibition of TGF-B1:
QuoteOur understanding of the pathophysiology of the overactive bladder is poor. It has been proposed that localized contractions result in the abnormal stretching of bladder smooth muscle. We hypothesize that stretch regulates the cellular processes that determine tissue size. The purpose of this study was to investigate the effect of stretch on apoptosis, proliferation, cell hypertrophy, and growth factor production in human bladder smooth muscle cells in vitro. Normal human detrusor muscle was obtained from patients undergoing radical cystectomy for invasive bladder cancer, and primary cultures were established. Cells were mechanically stretched on flexible plates at a range of pressures and times. Apoptosis was assessed by propidium iodide incorporation and flow cytometry. Radiolabeled thymidine and amino acid incorporation were used to assess proliferation and cell hypertrophy. ELISA and RT-PCR were used to assess growth factor production. Mechanical stretch inhibits apoptosis in a time- and dose-dependent manner and was associated with increases in the antiapoptotic proteins heat shock protein-70 and cIAP-1. Stretch also increases smooth muscle cell proliferation and hypertrophy, but hypertrophy is the more dominant response. These changes were associated with increases in IGF-1 and basic FGF and a decrease in transforming growth factor-beta1. Mechanical stretch regulates apoptosis, proliferation, and cell hypertrophy in human bladder smooth muscle cells.
- http://www.ncbi.nlm.nih.gov/pubmed/12388384?ordinalpos=16&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
This study (http://www.ncbi.nlm.nih.gov/pubmed/11278731?ordinalpos=19&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum) suggests a very different outcome in relation to differing stretch pressure.
I thought I'd place this in the general area, as it relates to multiple areas of treatment (VED, traction, natural erections etc)
Cowboyfood - thanks :)
Could someone please explain what corporal fibrosis is and how it can develop from peyronie's? I am always slightly afraid that it is constantly developing. I have lost length, but I am not sure if it is from the Peyronies Disease or CF.
Corporal Fibrosis -- where the tubes of penile "spongy tissue" that maintain erection are gradually replaced by inactive, fibrous scar tissue. The disorder occurs when the penis' sensitive spongy-tissue cells don't get the oxygen they need to survive, usually because of a chronic reduction in blood flow.
In my case it was caused by sleep apnea then severe venous leakage. Trimix injections for ED made it worse.
The pills for ED V, C, L do not help. Regular VED exercise helps keep the penis healthy but the only successful long term treatment is a penile implant.
Jackp
So, in order to prevent that from happening, what would one do? Did you have Corporal Fibrosis before you had Peyronies Disease? I understand many members haven't developed the condition, my example being Old Man having the disease since he was young. My concern is that since I am young the possibility of developing it slowly over the years since I have a long life ahead of me. I am thinking it would be better to talk to a urologist about this. It seems that you JackP are the only member I have seen that has spoken strongly about it, and the only member I've seen that truly knows that's what he had instead of just speculation. I want to know how many other members have been diagnosed with Corporal Fibrosis after they developed Peyronies Disease.
Note that Pentoxifylline which is used to treat Peyronie's has the capability to prevent corporal fibrosis and, in fact, has been used to treat corporal fibrosis. Alagebrium may also be useful in the case of corporal fibrosis. - George
RichB
I did not have corporal fibrosis before peyronies. To prevent it Do Not Stick A Needle In Your Penis For ED Shots!!! Make sure you have strong night time erections and follow the VED exercise recommended by Old Man.
Mine happend after severe venous leakage and using trimix shots for ED. It also increased penile shrinkage.
If you can find a Male Sexual Function doctor, not just a general practice urologist, he would be the best for treatment.
IMHO Peyronies with ED is when my problems started. Shots make it worse!!!
My cardiologist said no to pentox or any other supplements. I was on Plavix and then Warifian.
Jackp
Does anyone have any information regarding the hinge effect and how to treat it? It seems that due to my injury, the part that softens and doesn't hold an erection happens to be my entire penis...
EDIT: Are there any cases of atypical peyronie's on this site? Any information on how they turned out or of them getting better/worse?
I seem to remember hearing the VED credited with helping reduce or remove the hinge effect in some sufferers, Rich.
RichB
Can you clarify your hinged effect? The way I read your post is that all of your penis remains soft, not just from the point of injury.
Jackp
Quote from: RichB on June 17, 2009, 05:02:12 PM
Are there any cases of atypical peyronie's on this site? Any information on how they turned out or of them getting better/worse?
How are you using the term and what makes you think your Peyronies Disease is atypical (if that is what you are suggesting)?
Hawk,
From what I have seen, "atypical" Peyronie's is designated as plaque that has grown in the septum of the penis between the two cavernosa. What makes it atypical is that there are all the classical symptoms of Peyronies Disease but no obvious plaque.
JackP,
When I get an erection and feel below the base of my penis, the tissue underneath is firm, hard, and feels like it always did when getting an erection and when I palpate it. Past this point, the tissue during an erection is soft, unable to hold an erection well, and what I can describe as "spongy." What is also notable is that the penis is easily moved back, forth, and all around, instead of just staying at one point when erect. It also does not stay at a specific angle when erect.
Quote from: RichB on June 17, 2009, 09:33:43 PM
From what I have seen, "atypical" Peyronie's is designated as plaque that has grown in the septum of the penis between the two cavernosa. What makes it atypical is that there are all the classical symptoms of Peyronies Disease but no obvious plaque
You raise more questions than you provide answers. First, where did you get that definition of atypical Peyronies Disease. I do not know that there is much in the way of typical (expected) plaque placement for Peyronies Disease. Plaque can be in any configuration on the tunica, and occurs in the cavernosum, and septum. or on all three. To me, Peyronies Disease is so individual in the trigger that causes it, the progression, the various stages, the deformity, the response to treatment, that I have no clue how one could declare a case typical or atypical (unexpected characteristics).
Secondly, a large percentage of Peyronies Disease patients have no palpable plaque.
I guess what I am saying is that I reject that use of the term "atypical" until I see it as a standardized definition used by a large percentage of Peyronies Disease practitioners. I have never seen that definition clearly explained by even one well know practitioner.
I base my definition of atypical on this link: http://www.medicalnewstoday.com/articles/62103.php
I call them as I see them. I understand what you are saying though, I'll keep it in mind with future posts.
in mouse Subcutaneous Connective Tissue...
I recall I while back I asked whether it would be useful for people to use the VED following a peyronies diagnosis if pain was still present. While this isn't strictly an answer to that, it is an interesting study which suggests that directly after receiving an injury it may in fact be very beneficial to stretch. In may be a windows of opportunity type situation, but it does perhaps offer an insight into one mechanism by which the VED and even pre-emptive stretching (for those with peyronies but no or little curve as yet) could be useful, and perhaps how gradual remodelling or recover can occur where defortity is already present.
If a person is in pain it is perhaps their natural inclination to rest until they are healed. In some conditions this is likely true, but in peyronie's the inflammatory cascade is already in motion, so in my view stretching by daytime and night time erections AND VED use or light traction is as important as oral treatments.
QuoteTransforming growth factor beta 1 (TGF-b1) plays a key role in connective tissue remodeling, scarring, and fibrosis. The effects of mechanical forces on TGF-b1 and collagen deposition are not well understood. We tested the hypothesis that brief (10 min) static tissue stretch attenuates TGF-b1-mediated new collagen deposition in response to injury.Weused two different models: (1) an ex vivo model in which excised mouse subcutaneous tissue (N¼44 animals) was kept in organ culture for 4 days and either stretched (20% strain for 10 min 1 day after excision) or not stretched; culture media was assayed by ELISA for TGF-b1; (2) an in vivo model in which mice (N¼22 animals) underwent unilateral subcutaneous microsurgical injury on the back, then were randomized to stretch (20–30% strain for 10 min twice a day for 7 days) or no stretch; subcutaneous tissues of the back were immunohistochemically stained for Type-1 procollagen. In the ex vivo model, TGF-b1 protein was lower in stretched versus non-stretched tissue (repeated measures ANOVA, P<0.01). In the in vivo model, microinjury resulted in a significant increase in Type-1 procollagen in the absence of stretch ( P<0.001), but not in the presence of stretch ( P¼0.21). Thus, brief tissue stretch attenuated the increase in both soluble TGF-b1 (ex vivo) and Type-1 procollagen (in vivo) following tissue injury. These results have potential relevance to the mechanisms of treatments applying brief mechanical stretch to tissues (e.g., physical therapy, respiratory therapy, mechanical ventilation, massage, yoga, acupuncture).
-
http://www.ncbi.nlm.nih.gov/pubmed/17654495
A quick check revealed that this was posted a while back, but I see no reference to the entire detailed report which makes for very interesting reading:
http://www.emba.uvm.edu/~iatridis/me208/langevin_JCP_2008.pdf
From the pdf in previous message:
QuoteTo date, studies of
cultured cells and tissues examining the effect of mechanical
forces on TGF-b1 and matrix remodeling have nearly
exclusively employed prolonged (hours to days) cyclical or
static stretch of low amplitude (less than 15% strain) (Stauber
et al., 1996; Zhuang et al., 1996; Hirakata et al., 1997; Gutierrez
and Perr, 1999; Lee et al., 1999; Hinz et al., 2001; Kessler et al.,
2001; Grinnell and Ho, 2002; van Wamel et al., 2002; Atance
et al., 2004; Sakata et al., 2004; Loesberg et al., 2005;
Balachandran et al., 2006; Balestrini and Billiar, 2006;). Under
normal physiological circumstances, some amount of static
tissue tension or ''prestress'' is present to varying degrees in
different parts of the body while prolonged, repetitive cyclical
stretching of tissues occurs due breathing, arterial pulsations,
and repetitive movements such as walking (Tomasek et al.,
2002; Silver et al., 2003; Ingber, 2006). During wound healing or
chronic pathological conditions such as fibrosis, tissue tension
can slowly increase over days to weeks due to the contractile
activity of myofibroblasts (Stopak and Harris, 1982; Tomasek
et al., 1992; Arora et al., 1999; Grinnell, 2000; Hinz et al., 2001).
It is generally accepted that, when applied over an extended
time period in the presence of TGFb, low amplitude static or
cyclical stretch causes an increase in the synthesis and
deposition of collagen (Leung et al., 1976; Lambert et al., 1992;
Chiquet, 1999; Kessler et al., 2001; Grinnell and Ho, 2002;
Atance et al., 2004; Balestrini and Billiar, 2006). Our results, in
contrast, show that brief, moderate amplitude (20–30% strain)
stretching of connective tissue decreases both TGF-b1
and collagen synthesis. This effect, opposite to that of
prolonged stretch, highlights the critical importance of ''dose''
(i.e., duration, amplitude, frequency) in mechanically induced
connective tissue remodeling.
In contrast to my comments in the previous message, this additional information from the study perhaps suggests that prolonged stretching via traction is in fact a bad idea in the active stage of peyronies. It may in fact increase TFG-B1 and collagen production, in which case it would be more suited to stable conditions. The VED on the other hand fits in well with the use of "brief stretching" (10 mins twice daily in this case) so would probably be more of use during he active stage. Of course this is just one study, but hopefully at some point other information will back it up in future.If not maybe the study isn't of value. How much this info truly relates to our specific situation is anyones guess, but it's a good read and could impact how people approach treatment.
Be very careful in extrapolating lab data to humans.
Stretching out a matrix upon which cells are growing in cell culture to determine what "stretch" does to their expression of genes and gene products may be very different than what happens in the body.
Tim
Quote from: RichB on June 18, 2009, 12:27:12 AM
I base my definition of atypical on this link: http://www.medicalnewstoday.com/articles/62103.php
I call them as I see them. I understand what you are saying though, I'll keep it in mind with future posts.
First, I am not asking you to keep anything in mind concerning your posts. Post what you care to post whenever you care to post within forum rules. I am just trying to clarify the discussion. If we attach different definitions to the same terms communication becomes impossible.
The link you posted describes a very small subset with plaque isolated to ONLY the septum. This plaque seems to be the result of penile injuries that caused a hematoma in this area.
Are you saying you meet all these criteria and that you have been diagnosed with plaque isolated to this one area?Next, it is my understanding that while the above description would meet the definition of "atypical" (because is not what one would expect), an entirely different set of unexpected developments would also be called atypical. This means when you ask, "does anyone have atypical Peyronies Disease " that in theory several could correctly answer yes and none of them would share your set of circumstances. Atypical simply means conditions that are not typical.
Carried to the absurd, an atypical response to hay fever could be that only one nostril became stuffy. Another atypical response could be that drainage filled the patient's lungs and caused pneumonia. One patient asking, "who else has atypical hay fever", would not return responses that slightly matched that patients symptoms.
If you have plaque known to the isolated to the septum, you would get more accurate responses by asking, "does anyone have plaque isolated to the septum?"
RichB
Do any of the ED pills V, C or L or VED thearpy help?
Jackp
I have yet to try any of them, but simple L-Arginine has helped, so I am assuming the official pills will too.
Quote from: Tim468 on June 18, 2009, 08:27:13 AM
Be very careful in extrapolating lab data to humans.
Stretching out a matrix upon which cells are growing in cell culture to determine what "stretch" does to their expression of genes and gene products may be very different than what happens in the body.
Tim
The study in question used both ex vivo and in vivo models.
Hi RichB,
do you have the full text of the article in PDF that you can send by email? The journal is only accesible by subscribers.
Quote from: Hawk on June 18, 2009, 09:20:02 AM
Quote from: RichB on June 18, 2009, 12:27:12 AM
I base my definition of atypical on this link: http://www.medicalnewstoday.com/articles/62103.php
I call them as I see them. I understand what you are saying though, I'll keep it in mind with future posts.
Dear anyone:
If any of you have taken Cirprofloxacin or any FQ drug I would like to talk to you. Please PM me if you have.
-RichB
I have just been reading the whole article of teh septal hematomas, here is the link
http://www.jurology.com/article/PIIS0022534706021823/abstract
You just need to go to the link FULLTEXT-PDF and you can access it. I did not realized but this journal is open access.
The symptoms they describe are quite similar to mine, but I was done two ecography-doppler in flaccid and they told me they found nothing abnormal.
The entire tip (top third when flaccid) of my penis is scar tissue. I still get erections, but they are still kind of painful 2 months post injury. I have not lost size or girth, but is this something I should expect? Like I said, it is only the tip of my penis. When having sex my penis was bent upwards an inch from the head.
The most worrysome part of what happened is the painful erections, and the fact that I have a circular dent around my penis where the tissue ends. Please tell me it does not progressively get worse/more painful/more curved.
Since I now see my count as 1338, then I assume that there is a glitch in the system that turned 1337 into "leet". I do note that the two 3's could look like capital E's, an L as a 1, and a 7 as a T, but it was truly weird to see my post count as "leet". Luckily Hawk noted this and emailed me - so someone else saw it too.
Tim
YoungOne - I think it's a hard one to call, but here's hoping that it doesn't worsen. As you're doing everything you can to keep your penis healthy, then let us hope that there is more chance of a positive outcome!
All,
I thought I'd offer up some clarification on a person's (located in the U.S.) First Amendment right to free speech.
The 1st Amendment's prohibition on restrictions of free speech only restricts the Federal Government, and state governments via the 14th amendment, from abridging one's right to free speech. (meaning that until the passage of the 14th amendment in 1868, states could prohibit all the speech it wanted!)
However a person's right to not have the government restrict their speech is not unlimited. Our federal and state governments may restrict our right to free speech for a compelling governmental interest provided it is the least restrictive means to accomplish the compelling governmental interest (for example, incitement, obscenity, child pornography).
The 1st and 14th amendments do not apply to private individuals or entities. Generally, a private entity may restrict speech, despite the fact that the speech is not criminal (gov't can't restrict the speech, but a business can restrict employee speech that is non-criminal).
This forum is a private entity and the 1st amendment is not applicable.
That is why it is perfectly legal for the forum to restrict speech in the manner that it does (In fact, the forum moderator could choose to regulate forum speech arbitrarily!).
According to the forum rules, "anyone suspected of posing as a Peyronies patient to influence a commercial transaction (a shill), is subject to an immediate and permanent ban."
In other words, at the moderator's discretion, anyone "suspected" may be immediately and permanently banned.
So, if I understand the forum rules correctly:
In regards to an alleged Spammer and our forum's speech restrictions,
the issue is NOT whether their purported cure is effective, the issue IS whether they are a shill.
CF
Are there any diseases similar to Peyronie's which have been studied/experiemented around extensively?
In my research I am finding Peyronie's has not had all that much work done on it over the years, so am wondering if a disease with similar causes and possibly similar treatments may have more info for me.
Peyronies Disease is similar to any other autoimmune disease, skunk.
Google "fibrosis", and you'll find pulmonary, cystic, renal, etc. These all apply, as Peyronies Disease involves ongoing fibrosis.
Check out things like MS and Alzheimer's and other diseases that cause plaque to build up in the arteries. This would potentially apply to Peyronies Disease. Any disease that involves TGF-B expression or abnormal collagen production (keloid scars, etc.) will apply.
There is no one disease that would be considered a sister disease to Peyronies Disease, except for perhaps Duptuyren's Contracture and Frozen Shoulder. But they are just as overlooked as Peyronies Disease.
We're all following the same trails you're setting down. George and Tim are two of the contributors who are very knowledgeable about these things. I'd advise you to read the forum archives, and from them you will get a good idea of where we've been with our research, and hopefully get a better idea on where to go with yours.
Is this non-surgical treatment overview present anywhere on the site: http://www.nature.com/aja/journal/v10/n1/pdf/aja2008211a.pdf As it's by Levine, I'd have thought so. Just just in case it isn't, I'll post it here.
There is a new study out from McGill University where researchers achieved a ground breaking "total reversal" of early MS in mice. They did it by suppressing inflammation. This is an indication that TOTAL suppression of inflammation could potentially put any of these degenerative diseases, including Peyronie's, on a path of slow healing. - George
Quote from: George999 on August 12, 2009, 10:39:15 AM
There is a new study out from McGill University where researchers achieved a ground breaking "total reversal" of early MS in mice. They did it by suppressing inflammation. This is an indication that TOTAL suppression of inflammation could potentially put any of these degenerative diseases, including Peyronie's, on a path of slow healing. - George
Sounds promising. Would be great to hear more if/when the info is available.
-
Here it is..
Quote from: newguy on August 12, 2009, 02:20:53 PM
QuoteA new experimental treatment for multiple sclerosis (MS) completely reverses the devastating autoimmune disorder in mice, and might work exactly the same way in humans, say researchers at the Jewish General Hospital Lady Davis Institute for Medical Research and McGill University in Montreal.
MS is an autoimmune disease in which the body's own immune response attacks the central nervous system, almost as if the body had become allergic to itself, leading to progressive physical and cognitive disability.
The new treatment, appropriately named GIFT15, puts MS into remission by suppressing the immune response. This means it might also be effective against other autoimmune disorders like Crohn's disease, lupus and arthritis, the researchers said, and could theoretically also control immune responses in organ transplant patients. Moreover, unlike earlier immune-supppressing therapies which rely on chemical pharamaceuticals, this approach is a personalized form of cellular therapy which utilizes the body's own cells to suppress immunity in a much more targeted way.
GIFT15 was discovered by a team led by Dr. Jacques Galipeau of the JGH Lady Davis Institute and McGill's Faculty of Medicine. The results were published August 9 in the prestigious journal Nature Medicine.
GIFT15 is composed of two proteins, GSM-CSF and interleukin-15, fused together artificially in the lab. Under normal circumstances, the individual proteins usually act to stimulate the immune system, but in their fused form, the equation reverses itself.
"You know those mythical animals that have the head of an eagle and the body of a lion? They're called chimeras. In a lyrical sense, that's what we've created," said Galipeau, a world-renowned expert in cell regeneration affiliated with the Segal Cancer Centre at the Jewish General and McGill's Centre for Translational Research. "GIFT15 is a new protein hormone composed of two distinct proteins, and when they're stuck together they lead to a completely unexpected biological effect."
This effect, explained Galipeau, converts B-cells -- a common form of white blood cell normally involved in immune response -- into powerful immune-suppressive cells. Unlike their better-known cousins, T-cells, naturally-occurring immune-suppressing B-cells are almost unknown in nature and the notion of using them to control immunity is very new.
"GIFT15 can take your normal, run-of-the-mill B-cells and convert them -- in a Superman or Jekyll -Hyde sort of way -- into these super-powerful B-regulatory cells," Galipeau explained. "We can do that in a petri dish. We took normal B-cells from mice, and sprinkled GIFT15 on them, which led to this Jekyll and Hyde effect.
"And when we gave them back intravenously to mice ill with multiple sclerosis, the disease went away."
MS must be caught in its earliest stages, Galipeau cautioned, and clinical studies are needed to test the treatment's efficacy and safety in humans. No significant side-effects showed up in the mice, he said, and the treatment was fully effective with a single dose.
"It's easy to collect B-cells from a patient," he added. "It's just like donating blood. We purify them in the lab, treat them with GIFT15 in a petri dish, and give them back to the patient. That's what we did in mice, and that's what we believe we could do in people. It would be very easy to take the next step, it's just a question of finding the financial resources and partnerships to make this a reality."
- http://www.sciencedaily.com/releases/2009/08/090811143725.htm
Please help...
i did not know where else to look.
i am a 19 year old boy i am tall and a bit overweight.
about 6 months ago i was with a girl making out...i got so horny and turned on that i started shivering (it was one of my first experiences). since then though i can no longer have a fully erect penis at all (just weak ones) and my sex drive is very low. i have been with another girl now for nearly 5 months and i havent had the sex drive or the penis strengh to have sex with her.
please can someone tell me that this will go away ts deppressing me beyond belief
jaybee - This may be more of a psychological issue. If you experienced no pain during intercourse, and do not have curvature etc, it sounds like an anxiety issue to me. You could always go to see a doctor though is this is troubling to you.
i havn't been able to have intecourse...im still a virgin because it is still weak.even when masterbating alone it is weak. its all the time.
i have also noticed and increase in the curvature of the penis and have been getting irritations and red marks under the forskin
can anyone else confirm what is wrong
Quote from: jaybee on August 12, 2009, 06:01:04 PM
can anyone else confirm what is wrong
See the PM I sent you.
Les
Jaybee,
Background so far:
age 19 - Peyronies Disease unheard of without a significant injury at age 19
you got horny and began shivering - not Peyronies Disease related
You feel your sex drive is low - Not Peyronies Disease related
Your erections are week - a symptom of many problems including Peyronies Disease
red dots under your foreskin - Not Peyronies Disease related
Jaybee,
There is no reason to even suspect you have Peyronies Disease. Your problem could range from psychological, to diabetes, to low testosterone, to about a dozen other issues. You need a consultation with a good urologist or even better a doctor specializing in sexual dysfunction. We feel for you but cannot diagnose you over the internet.
The first step is to see a doctor. This may be nothing but stress.
i understand that it is very unlikely that i have peyronies disease however i'm desperately trying to find someone who may know whats happening and i thought that this forum would be a good place to start.
thank you for your help so far
A one thing to note prior to seeing a physician is to note whether you get firm night-time erections (or upon waking).
It is important you relax and quit stressing since stress is an erection killer.
jimifan - try pentox!!!
Quote from: jimifan on August 13, 2009, 12:12:22 AM
Age at onset of Peyronies Disease / or I have had Peyronies Disease for X Years - Onset at age 37, nearly two years ago Nov. 2007; formally diagnosed June 2009.
Very First Symptoms - Sudden onset; woke with a painful morning erection that jolted me awake. My penis was bent upward and hurt like hell. I thought it was some temporary injury or glitch in the system; thought it would work itself out...
My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes - I was convinced I'd suffered a fractured penis, as a day or two before waking with that unforgettable erection, my wife was on top and we had a bit of a missed entry. ...
Where I am Today -, future plans – Now I'm just applying the TV (starting the second month) and hoping I see signs of improvement. I'm interested in getting a vacuum pump to see how that works.
newguy
As I think back in my 40"s I complained to my PCP that I thought my testosterone was low. I could not get him to do a blood test the only thing he did was a PSA that came back normal at 0.5.
Years later when I went to a urologist because of a prostate infection I showed him the recent curve. He said I had peyronies, put me on Vitiamin E 400IU 3 Times a day and Potaba. He also checked my testosterone and it was real low.
Most men get peyronies in there 50's or later. Low T starts earlier. Could be a link.
Jackp
My urologist here in the Twin Cities (who is also a specialist in sexual function disorders) always checks T-levels on Peyronies Disease patients. He has never had a case where there has not been a deficiency in useable T-levels when Peyronies Disease is involved. I have been giving myself shots for 2 years now & will continue to do so even after my upcoming implant surgery in a week. This is not a cure for Peyronies Disease but a critical supplement IMHO. I'm sure that there is a link but what it is-who knows.
The following website is uniquely oriented toward launching an advocacy group for Peyronie's patients is:
http://curepeyronies.net/ (http://curepeyronies.net/)
Hope that some of you find these sites helpful in some way. - George
George,
Looks interesting, Do you know who writes the material for this blog. I did not see an obvious "About Us"/me area.
No, I noticed that as well about the UK blog. It just now went up so I expect they are still shagging things out as they go along. - George
Howdy
First I wanna say very informative website. Awesome knowledge. OK been lurking awhile read so much.But still need advice. OK here's my deal. I'm 32 born with noonans syndrome ( male version of turners) When i was a little boy my testicles didn't drop, so had surgery for that. At age 14 I jumped over the car door of my moms mustang convertible with very loose shorts on ,door wasn't shut all the way so when i hit it ( hard to explain but i think you get the picture) somehow i shut my testicles in the door along with tip of my penis. needless to say was in hospital for a week. Had to get sewed back up. Well went home, 2 days later I had testicles the sized of cantaloupe. Went back and one was infected and had to be fixed, i dint recall what was wrong with it, after a month they were still huge but every url i went to said they would be fine just enlarged. Then i joined the army served 10yrs, well my Humvee I was ran over a roadside bomb, I was blown about 25 ft, crushing my skull and Again took a hit to my testicle's, this time a piece of metal split my scrotum in half and severing one and I lost it. So know i have only 1 testicle and allot of scars. OK so ( sorry for long history but i think it may be important) about 4 yrs ago i start having extreme pain when i pee, when i have erection, when i walk anything to do with the area. I was also starting to curve allot to the left, by now id say its at 45 % almost 90 deg to the left mostly when erect. I also have weird indentations on both sides of my penis at the base, along with a hard ball about the size of a grape in my scrotum sack. The worst thing though is intercourse with my soon to be wife ( or ex gf if this dint get fixed :( ) when its my time for release um it feels like my indsides are coming out of my penis, starting at my scrotum and going all the way out. Also if i discharge anything its dark brown and very, very minimal. But the pain is crippling and for days. I cant walk, my scrotum is swollen twice its size and i fear urinating because it hurts so badly.OK now for what i have done for this.OK i am ex military and was honorably discharged but lost my benefit's 4yrs ago and To this day am struggling to get them back another long story for another day i guess.So i went to er, first time about this issue 3 yrs ago, they said i had a urinary tract infection, sent me home with antibiotics. I went to a Dr whom gave me a complete physical and in the prostate exam said i had prostatitus. OK so i took antibiotics for about 6months trusting this guy. Went back to er same issues but this time was leaking blood out of tip of penis that's why i went. Dr there said i pulled something inside my bladder? I was lost, that didn't make since to me but i took the pills went home. Saw my reg Dr the next day. Now I'm send out for every xray, sonogram, anything to look into this. A week later she tells me i have prostate cancer. OK fine, I got for rad and other shots and pills and tests and last yr she says I'm healed. In meantime nothing has changed. So then she leaves here practice. I set up appointments with several url and i pay allot to find out nothing. I'm giving flow max and something else i cant recall at this point. So now this last url says prostate cancer is stage 2 and not going away. In between all this every visit is out of pocket cuz i have no insurance. and nothing is getting better. I'm getting jerked around by the Dr's here and no i have no Dr cuz she quit her practice and the fill in one doesn't know why I'm coming to see her. Wed i went to er, i have immense pain in my scrotum its swollen, leaking blood out of tip penis, curve still there, marble, and lumps. Er Dr tells me I'm to sexually active. I lol at him because i have had only 2 partners in my life my first wife whom was killed 4 yrs ago. And my current gf. I told him id been tested for every std known and I'm clean. He looks at me and send me home with Advil, tells me to call my normal Dr. These ppl dint get I'm in extreme pain here. If this cancer dint kill me then this penis thing will...I cant take this pain anymore.
I read everywhere on this site, but couldn't find what fit my condition, and i really hope i didn't post this in wrong spot , I didn't see a new members posting area I am just hoping for a Lil advice or something. I cant live like this anylonger. Ty for reading and any suggestions you may have, and sorry for long post but its a lot to take in
If there is anything I know more about than Peyronies Disease it is prostate cancer. I am a prostate cancer survivor as are several others here.
As soon as you said you ejaculate brown, it seemed likely that that may be old blood from the prostate. There are only so many places in the body where blood can get into ejaculate. What you describe is what every man sees after a prostate biopsy.
It sounds like you may well have Peyronies Disease but it is time to forget about Peyronies Disease because your other issues (blood from penis, brown ejaculate, prostate cancer diagnosis are your first priority. DID YOU HAVE A PROSTATE BIOPSY? If so you need to know your:
Gleason Score
Your PSA
How many biopsy cores were positive
persentage of cancer in each core
I also missed what treatment if any you had for prostate cancer. All prostate cancer treatment is followed by a PSA blood test at least every 6 months for 5 years or more than test every year for life.
If you are suggesting you no longer qualify for veterans medical care you have to start phoning every agency in your state and also call the American Cancer Society. They man phones 24/7. If you truly have a prostate cancer diagnosis you are in the wrong forum for now.
Please respond to my questions then we will continue. I will then likely refer you to a prostate cancer forum and introduce you there to help get your background posted.
Hawk
Grunt, It might also help if you tell us what general geographical area you are located in. - George
Grunt:
I am a retired Marine. I never heard of any veteran who has gotten into the VA system who lost his benefits. Once you're in the system you are in it for life. Besides, you were wounded in action and have disability from your service. You are surely covered. If someone in VA says different, they are wrong. Stand up for your rights.
Mick
Ok I should clear a few things up. When I posted it was so long I was trying to be brief but to the point.
Va services: I wasn't discharged for disabilities. To be honest I was discharged due to a mental break down. I watched my brother die in front of me and I lost it. This was after I was sent home and repaired. About 1month almost 2 my unit went back. This is when I met up with my brother ( he was in the unit I was attached to) about a week later he was killed. I saw it and I lost it mentally. And so since I was a out of control child growing up and had to get a waiver because I saw a shrink to understand me they put out on a pre-existing condition. I am fighting this, seems only thing I can get is a service connected injury so I can get benefits. I was sent to a tbi dr and they say I have it.
Biopsy on prostate: It was done prior to my Dr leaving and as of right now I don't know what is or happened with that.But i specifically remember it happening. And the brown stuff started happening a lot after this time I do recall.I did do several blood tests. This place I go is county and they keep passing me around. I know that the biopsy was done long ago and I am told they want to do a new one at least that's what this last urologist says. But, all these visits are coming out my pocket which are very shallow since I'm not working. I cant leave house by myself for to long Or i forget where I'm going and sometimes how to get back home. As far as treatments its been a long yr all I have had are shot, after shot, I didn't qualify for advanced treatment as i was told, i couldn't afford it. Lots pills, some antibiotics, some pain and some for swelling. With my Dr leaving this place and with me not being able to afford anything I'm stuck right now. I am fighting for my va rights you can believe that. Since I was tested and Clearly stated i Have Tbi I will be getting service connected benefits, at least that's what the gentleman helping me said.
Hawk, that's awesome you survived.
Right now i want my dang penis to stop hurting so badly i can live with this cancer stuff. I really don't notice it to much not like this pain i have its horrible. I know pain I been shot, stabbed, blown up against a wall hit with shrapnel and had my testicles slammed in a car door. But this is worse then any of those experiences.
Also forgot to mention I'm in northern California, 2 hrs north of Sacramento
Edited with spell check - Hawk
Am am rushing out the door but will respond soon.
Grunt, one quick note. You type like I do so it will help if before you click the "Save" button on a post, you click the "Spell Check" button. It will help all that read your posts. I am sorry for your many difficulties and hope we can offer some helpful information and support.
PS to all on the forum: Before setting up the new forum format, this kind of running exchange from Grunt or anyone else would have been next to impossible for any of us to follow including the person that started the post.
Grunt, Here are some ideas for you to consider, some of which you may not have thought of yet.
1) I would contact Congressman Wally Herger's office regarding your VA problems if you haven't already. Congressman Herger represents most of northern California's central valley. You never know where you might be able to find somebody to help you out.
Contact information is:
Chico Office • 2635 Forest Ave, Ste. 100 • Chico, CA 95928 • phone: (530) 893-8363 • fax: (530) 893-8619
Redding Office • 410 Hemsted Drive, Suite 115 • Redding, CA 96002 • phone: (530) 223-5898 • fax: (530) 223-5897
2) I would check out the following web pages and try to contact every veteran assistance organization listed that might potentially be helpful:
http://www.csuchico.edu/veterans/updates/index.shtml (http://www.csuchico.edu/veterans/updates/index.shtml)
http://www.newsreview.com/chico/content?oid=43463 (http://www.newsreview.com/chico/content?oid=43463)
3) I would look into finding someone who might be willing to prescribe "low dose naltrexone" for you and follow you up with it. Low dose naltrexone is an off label drug that is being used to help people with a number of problems including autoimmune problems, cancer AND emotional problems. It also has very few side effects, none serious, AND it is very inexpensive. Your local compounding pharmacy might be able to provide you with more information on this drug AND with the names of doctors that prescribe it. There is a pharmacy in Chico where the pharmacists are LDN experts. There contact info is:
Apothecary Options
3006 Esplanade, Suite I
Chico CA, 95973
Toll Free: 1-866-586-4633
Phone: 530-345-7979
Fax: 530-345-9797
These are just a few ideas, I am sure that other members here will have more. But you have start trying some things. Eventually you will find help and just the process will help you to deal with this emotionally. Obviously the path you are on now is just leading you in circles so you have to try to break out of that and make some new contacts with people who can potentially help and be an advocate for you. I wish you the best and if I think of something else, I will post it. -George
grunt:
One other suggestion: By all means contact your Congressman or Senator from your district. Mine have helped me immensely for things in the past I could not get help for otherwise.
They are supposed to be the servants of the people they represent and should be able to take your case and get something done for you.
BTW, I am a retired Master Chief Petty Officer (E-9) from the U.S. Navy with over 37 years active and reserve time.
Regards, Old Man
Well first wanna say thanks. I am so lost and tired running in circles. I'm a fairly passive guy and have been just listening to these Dr's, but I'm sick of it now. Today i did contact a few people and one was a VA rep here i been dealing with. Since i now have all my medical records and this new diagnosis the gentleman said i can get service connected. better then what i had, and frankly as long as i get something for medical I'm very happy with this. My girlfriend is calling around to some cancer laces in town after sh read what i posted and you all posted shes very eager to help.
George- Ty for the advice and those where the links we used to started somemore outside help from this circle i been in. I'm also gonna call down to Chico and get some info on that drug. I will try anything at this point.
Hawk- Sorry about the typing I hate these computers and I don't type very well. Also I don't know what ya mean about "running exchange" or forum format you speak of. Really new to computer's
Quote from: Grunt on August 24, 2009, 06:41:03 PM
Hawk- Sorry about the typing I hate these computers and I don't type very well. Also I don't know what ya mean about "running exchange" or forum format you speak of. Really new to computer's
Grunt the PS: comment was meant for others. I was comparing the way our forum used to be setup (before you ever arrived) to how it is setup now. Also do not be sorry about the typing. I am a terrible typist. That is why I wanted you to know about the spell check. it helps other to understand us better and to respond to our posts.
Grunt, I am VERY interested in what your doctor says about prostate cancer. keep us posted. We want to help all we can.
Grunt, The LDN is a really good drug that has helped a lot of people, but it is no substitute for following up with a good urologist as soon as possible to either rule out the possibility of prostate cancer or get it adequately treated. So I am glad that you now have the VA issue squared away and can begin dealing with that issue. You might be ahead to try to make an appointment with a urologist at the VA hospital in San Francisco if you now have coverage for that. They have a lot better resources there than you will find in your area and are a lot more likely to follow through for you. I wish you the very best on this. We all owe you a debt of gratitude for your service to our country and as far as I am concerned now that you are ailing you deserve the best of care. - George
Well my gf talked to the folks in Chico i was referred to and sounds like something i can do and will try. I set an appointment up for the local VA. Feels good to be able to do that. So now instead of these county doc's running me in circles I will have a much better chance. I will see if i can get to a URL in San Fran, I will call anyone i can to get what i need and get seen. They are gonna be starting me from fresh at the VA though, but i was assured that my records from the county doc's would be read and took into consideration for meds and such. So right now its the grand ole hurry up and wait game. Thought when i left the army them days would be behind me lol.
Mentally, I am relived, but still depressed and stressed. theses county folks ran me threw the ringer
QuoteI hope everyone takes a moment to read your recent post in the forum's improvement thread regarding your VED usage.
https://www.peyroniesforum.net/index.php/topic,466.msg22062.html#msg22062
Way to go!
CF
Cowboy: Thanks for the encouragement...and for the support.
JackieO
Tim or All,
I read Tim's March 31 post where he mentioned he can experience pain with hard erections.
https://www.peyroniesforum.net/index.php/topic,35.msg19084.html#msg19084
Last night I noticed that I had a relatively hard erection and I temporarily felt some
discomfort/slight pain in the area of my dent; and, I felt this sensation when I was in a certain position. . . when my hips were kind of in a squatting position.
Previously, I've sometimes noticed that when I have a hard erection my penis sometimes feels "strained" or a kind of "pushed to the limit" type sensation. But, last night's sensation was more discomfort/slight pain
Anyway, I wondered what anyone's thoughts about this type sensation.
It is POSSIBLE you are having an inflammation flair up.
Im not sure where to post this, so i figured here would be best. But i was wondering if anyone knows anything about the Happeh Theory...basically saying that masturbation will destroy one side of your body. Is there any legitimacy to this claim? Has anyone heard of this before? It seems a little crazy to me, but has me paranoid.
@Starting2looseHope, sounds like quack science.
If that was true half my body would have been destroyed by age 18!
If that was true BOTH sides of my body would be destroyed because after the one side quit working, I would have promptly switched to the other until that one quit as well.
Kidding aside, it's a shame there is so much garbage information out there, especially considering that we are made desperate due to our condition. We need to remain vigilant against bad information and it's a good thing that Starting2LooseHope brought this up here. It's important to get this kind of thing out in the open.
Skjald
Starting to loose hope... (BTW, your name always bothers the grammarian in me because I think that you meant to say 'starting to lose hope', but I digress...)
This is an utterly nonsensical theory. I found this within two seconds of searching the web (the second rated google hit):
"Masturbation being essentially the touchstone for the entire synthesis, Happeh Theory considered that masturbation and pornography were invented by Israel to weaken people into becoming slaves. Further along these lines he stated that masturbation was harmful to ones health, and one could recognise a masturbator by the direction in which he or she leaned. Amazingly, this was accompanied by Photoshopped "evidence" of models posing, or even of individuals merely standing innocuously about, along with insinuations about their probable moral stature."
and:
"Happeh's argumentative thrust was that approved scientific method and critical thinking were all that is necessary to understand Happeh Theory, unless approved scientific method and critical thinking illustrated that Happeh Theory was possibly the most insane platform ever announced by a creature capable of speech."
and:
"One concrete hypothesis that emerged from this element of Happeh theory was that the arm primarily used for masturbation becomes atrophied. Thankfully, this hypothesis has yet to be tested by anyone anywhere."
Now, my dear STLH, you might note a bit of sarcasm in that last comment I quoted. Since virtually everyone masturbates, we would all have withered arms right? Therefore, that statement is "ironic".
That you might find this theory a "bit crazy" worries me. What you should find it as is "bat-crap, bull-goose loony crazy."
To think it is reasonable, or worrisome, means that you are not yet able to tell the difference between good and bad information on the web. You are wise to ask here. You might get teased here a little but you will not get steered the wrong way.
If you want information on Peyronie's Disease, I would suggest that you get it here only. Ignore the rest. Being able to tell apart good from bad information requires some practice - I am glad that you asked.
Tim
I do not have a problem being teased. Just a problem with whats going on with my penis. Another question I have is about venous leakage. I was diagnosed with peyronies about 6 months ago...i have probably had it for almost a year. The pain is still here. I am wondering if venous leakage causes pain? Also, if I am still achieving night time erection does this rule out venous leakage? The thing that is worrying me about venous leakage is that I am having a hard time staying erect without constant stimulation at times, but at others i can stay erect for multiple ejaculations. I still have not lost hope though...
Starting2 - It's possible that there is a psychological component to this. If you achieve night time erections frequently then that should be taken as a positive sign. Maybe you shuld create a page in the Our Histories section so that people can read a brief summary of your condition and any changes that have taken place. That would be apositive step. I'm glad you're not losing hope. Keep your chin up!
I will certainly start a history page when I have more time. As for now I would like to know if anyone else is experiencing pain in their groin area on the same side of their bend? it feels like its in my groin below my testicles but I am fairly certain it is still my penis not my groin , it is a dull constant pain when its their. But it is an on and off pain. Also, does venous leakage cause any type of pain?
I had severe venous leakage but it never caused me any pain.
Jackp
Starating2:
I had very serious venous leakage before prostate surgery. After the operation and use of the VED, I can get erections by self manipulation or with the VED. However, they will only last a few seconds before leaking down. The restrictor rings that came with my VED do an excellent job for which they are intended.
Have never had any pain or discomfort due to the venous leakage, only lack of the ability hold up the erections long enough for penetration or sex.
Old Man
Im guessing i do not have venous leakage then. But I am going to mention it to my Doc just in case. Maybe he can rule it out for sure. Isnt there test for it? I can get a full erection without touching my penis depending on the time of day and visual, mental stimulation, and i still have night time erections. I still suffer from pain that does not want to go away. and a bend that has not worsen or improved over the last 8 months or so. If the pain would leave entirely i would consider that a win. but it wont. I thought the pain was suppose to go away after a year....Hot water baths and tylenol seem to help.
starting2 -
The continued pain isn't an ideal situation, but at least for now your bend appears to be stable. Hopefully in time the pain will go away. I remember in one case on here, when someone continued to have pain beyond two years, Dr Levine suggested that it could be nerve damage. I'm not so sure myself, but it's worth not ruling anything out. People differ, for some the pain lasts a couple of months, for others a couple of years, though that is a little more unusual, and appears to be something more particular to young people if the posts here are anything to go by.
From what you say here though, there really doesn't appear to be anything wrong with your ability to maintain an erection.
Hey guys I saw this on the UK Norm website:
Q. My penis is bent on erection and I am tightly circumcised. Can I restore?
Yes. By selectively working more on one side of the shaft than the other, the curve may be lessened or even cured.
This may be of some help to any men who are interested, so I decided to post it, for a tightly cut penis, this can cause some bending, it could be what some of the men on our forum have and don't know it. To regrow just slight foreskin could allow for full "growth" and a straight penis.
This is the best site on this topic on the web I know of.
UK Norm (http://www.norm-uk.org/index.html)
I don't know about the premise. Isn't the erect penis' shape determined by the TA and not the skin?
SlowandSteady,
If a circumcision is done to tightly, the penis can't grow quite fully, hence causing it to bend, I've talked to a few men who had this problem, restored just a little skin to give them some "slack" and their penis straightened out. The erect penis is just to tight or even painful. They also reported a gain in sensetivity.
Comebackid
I am circumcised and I have often felt that too little skin was left behind, contributing to the slight downward curvature I had pre-Peyronie's (I have very slight dorsal curvature now instead of pointing down). The penile skin there has always felt very tight during an erection and it seemed that skin from my body/testicular/pelvic area stretched upward to compensate, leading to an astonishing amount of pubic hair creeping up the ol' shaft. Needless to say, I keep things trimmed for everyone's comfort.
I don't want to stray too far off topic here, but my life, from institutionalized genital mutilation at birth (circumcision) to childhood crotch injuries, from unruly pubescent erections to worrying about penis size, from fretting over sexual performance as a dating man to this damn disease 7 month ago, has been one long experience in penile trauma. Isn't being a man great! ;D
I'm 30 now and I just can't wait for what's in store for the prostate and testicles in the next 20 years! I used to worry about having to get the digital exam at 40, but compared to all the squeezing, yanking and stretching I've endured at the urologist, the digital exam is starting to sound like a trip to a petting zoo with puppies, unicorns and kittens.
Also, pandas.
-pardon the threadjack,
Skjald
Skjaldborg, You gave me a good laugh :D
Your also right in that if your cut to tight, scrotum skin is pulled up onto the shaft, especially when cut tighter, this will keep your balls from hanging as long as an uncircumcised men. The problem is if you have hair, that skin with hair is then pulled up onto your shaft for a hairy shaft, some men have complained of this. I think our society in the usa oversimplifies the penis and testicles, like a man just has to show up for sex... this can be quite misleading, women just need to show up for sex!
Comebackid
I had a check-up with urologist Dr. Ritenour in Atlanta today. My appointment was originally scheduled with his assistant, but he was sent to Iraq for a year and Dr. Ritenour did my check-up.
He explained that he sees hundreds of patients every year and almost always examines their penis. He stated that he feels scar tissue in many men that had no idea the scar tissue was present.
He also commented to me that he was "glad to finally meet me" because he was somewhat familiar with my treatment plan and knew that I started it relatively early on since my diagnosis. He said that the VED, pentox, viagra, and supplements (l-arginine, ALC, D3, vit E) are excellent treatments. According to him, many men do not start a treatment early or to this extent.
He is particular fond of prescribing low-dosages of viagra because of the benefit of encouraging erections and stretching. He also likes the VED but he insists on a conservative approach (not to much stress or pressure).
So, I'm about 10 months into this since the condition presented itself last December. He stated that the scar had relatively very minor calcification compared to other Peyronies Disease patients. Of course, I don't know if any conclusions can be drawn to show a relationship between starting treatment early and relatively minor tissue calcification.
I decided to go ahead and let him do an ultrasound on me in a couple of months.
Also, he is referring patients to our forum. He stated he has visited our forum several times, but that he has not registered or placed his name into the list of doctors. I told him that I and a couple of others had mentioned his practice on the forum.
CF
cowboyfood - Fantastic posts and equally fasntastic urologist by the description given. Inquisitive, up to speed with the most current treatments AND recommends that pateints visit the forum.
QuoteHe explained that he sees hundreds of patients every year and almost always examines their penis. He stated that he feels scar tissue in many men that had no idea the scar tissue was present.
Interesting, and it doesn't surprise me at all...
Did he comment of whether he'd seen much positive response from the current treatment options, such as the ones you take?
Quote from: cowboyfood on October 15, 2009, 08:59:00 PM
He explained that he sees hundreds of patients every year and almost always examines their penis. He stated that he feels scar tissue in many men that had no idea the scar tissue was present.
Why is this notable? Is it because it suggests that all Peyronie's is caused by trauma, but often men completely miss the injury actually happening?
Quote from: skunkworks on October 15, 2009, 10:08:37 PM
Why is this notable? Is it because it suggests that all Peyronie's is caused by trauma, but often men completely miss the injury actually happening?
That's a theory. I know I couldn't feel mine until my first uro visit. And he showed me how and what to fell for.
Quote from: lwillisjr on October 16, 2009, 12:42:18 PM
Quote from: skunkworks on October 15, 2009, 10:08:37 PM
Why is this notable? Is it because it suggests that all Peyronie's is caused by trauma, but often men completely miss the injury actually happening?
That's a theory. I know I couldn't feel mine until my first uro visit. And he showed me how and what to fell for.
I didn't say that "men who do not realize they have scar tissue" did not have trauma. He was suggesting that trauma may occur to the penis as a result of an unremarkable event. For example, if an erect penis got crushed by a baseball bat causing the penis to basically break resulting in the formation of scar tissue, then this is a remarkable event remembered by all men. However, different types of pressure on the penis may also cause the formation of scar tissue.
In my case, my dent seems to be at the exact area of the penis where I would put the most pressure on it with my fingers when I masturbated. We didn't conclude that masturbation caused the scar, but acknowledged that it is a pressure point.
Otherwise, he acknowledged that there is no generally accepted treatment; he respects Dr. Levine's pentox recommendation while accepting the fact that no conclusive research exists establishing its effectiveness. But, he believes that pentox is a very safe drug to use and is interested in seeing results from its use.
He seems to be a big endorser of getting erections, blood flow in the penis.
So, since I know I will be seeing him in either December or the first part of January and the fact that he is a relatively young and interested urologist, I'd like others to suggest some questions I can pose to him. I will come up with some of my own. For example, what success has he seen in treating Peyronies Disease.
CF
Grunt - I just wanted to say I have the utmost respect for you =] You are a inspiration to me just like most of all the guys in this forum are. You kept strong and are dealing with your issues as smartly and calmly as you can. I'm really glad you have a gf to help you along with all of this. I know how helpful a understanding gf can be =D Hang in there Grunt! I'm sure with these guys help and your determination things will be looking up for ya.
Hello
I have had Peyronie's for about 3 years and have been experiencing a strange symptom in the last few weeks. When I sneeze, it radiates into the pelvis, pubis, and penis causing discomfort in those areas and pelvic spasm. The force of my sneezes are very strong and I have history of pelvic pain and prostatitis which causes my pelvic area to be sensitive. I have been to several urologists, but they are not sure what is causing this symptom. I am worried that this symptom will worsen my Peyronie's due to the force of the sneezing.
Has anyone experienced this symptom and any advice on how to relieve this problem?
When you sneeze, your abdominal muscles contract. If you have prostatitis, it may be pushing on your prostate, which in turn pushes on your genitals. I am not a medical professional, but this could be a loose explanation. What treatments are you currently pursuing for your peyronie's?
Hi, I wasn't sure where to place this post as it sort of touches on the under 35 topic aswell.
I'm 31 and so is my husband. We've been together since high school at the age of 16. My husband and I first shared our first intimate experience together just a few months short of our 18th birthdays. At that age I had not been with or seen any naked males below the belt line. So for as long as I've been with my husband I had thought nothing was wrong. It was just recently when doing some research and writing on this topic that I took interest and some of the symptoms caught my attention. For as long as I've known and been with my husband his penis has been verticle and bends from the base. It is so verticle that it hugs closely to his body. I don't know if he has ever experienced pain associated with this as it never has really occured to me to notice or pick up on any strange behaviour of avoiding sex. We have 3 boys our youngest being 1yr so intercouse hasn't seem to affect his ability to reproduce. But lately it has become awkward for me. I don't know how to approach the subject with my husband in fear of hurting his feelings. I did initially email to websites about Peyronie's disease with a suggestion to read but I don't think he did. I love my husband dearly and would stand by his side always. I am worried about how I should talk to him about it and the possible psychological aspects that some of you have experienced dealing with Peyronie's.
As a devoted wife I ask for advice about what if your partner approached you about this situation how would you feel? What way should I come across as loving and understanding as possible to my husband to approach this topic without him shying away from me or resenting me. I fear an impact on our relationship should I bring up the situation. I want to be honest to him as I don't know if just staying quiet would he disrespect me.
I've read through some posts and topics about what you guys are going through. I find it so unfair that some doctors turn a blind eye to this problem and put it into the too hard basket. I do hope there is some light at the end of the tunnel for all that suffer from Peyronie's and I endeavour one way or another to help my husband and find something that will hopefully bring back some kind of normalacy. Any advice is much appreciated.
Lea
Lea:
Just read your post and thought that I would add my take on what you are saying. There is much information that you did not give that could influence what we might suggest for you to do. However, above all, you must be very careful in any approach you make to your husband. Some men have a very difficulty time just even talking about their private parts. Any discussion about that area should be a mutual agreement and not become a topic of disagreement.
Having said the above, you need to find some nice way to bring up the subject and get his opinion on his situation. If he has not had any change in the size, shape or erections over the years, he might have a condition known as congenital curvature. Also, some men's penises simply point straight up when erect, so that might be his normal erectile state. You should try to discuss his past history a bit more in detail to determine if he has a congenital curvature or if he is presenting symptoms of Peyronies Disease.
Lastly, he should consult a good qualified urologist experienced with Peyronies Disease to get a good diagnosis of the problem. There is a ton of information on this forum just about any phase of men's health problem that is available for the two of you. So, explore any and all boards which includes many sub topics and threads with several thousand posts.
If there is any way any of us can help, just let us know.
Old Man
Thanks for the info, I plan to find out as much information as I can before I start sprouting possibilities.
I guess one good thing is we've been reasonably open about talking about what each others likes and dislikes about sex.
But I know it could be a touchy subject if something isn't going right.
I know he becomes disappointed if do not climax with him. Which is possibly no fault of his.
I think just lately we've had to abandom the situation due to neither of us getting to where we want to be and just the awkwardness of the direction his penis lies. Perhaps we need to be more innovative as the norm is no longer working.
Is there anywhere I could find some info on congenital curvature on this website that perhaps states the differences between the two?
I'll be sure to take things extremely careful when discussing any background details.
Lea
lea:
To get more information on the forum web site just type in congenital curvature in the search window in the right hand side of the pages. The home page has it also, any page that displays the little search window will work.
If you are saying that his curvature has occurred in the past few months or years, he may be presenting the typical symptoms of Peyronies Disease. Again, he needs to get checked for Peyronies Disease as soon as possible to make sure of the diagnosis. Early therapy for Peyronies Disease works best in the long run, so don't delay getting help.
Old Man
A firm erection pointing due North is something many men wish they had. However, if it pulls up so tight to the abdomen that it is awkward to insert when erect, then it sounds like a bit of a problem.
It is not clear if this is a new issue or if you are just paying more attention. Certainly, most men have an "angle to the dangle" ;) that affects the way their penis points when erect, but most erect penises can be forced to point a bit in other directions when erect. That should allow for other angles of entry during sex.
Weight gain (his or yours) can make some positions harder.
If grabbing him and pushing him "South" before entry doesn't work, or if it causes pain, then perhaps there is a problem, particularly if that is a new phenomenon.
Welcome to the forum, and I hope our direct approach to talking about these problems helps!!
Tim
I just thought I would report some other recent scarring I've got going on. This past summer I got some very minor scratches on my arms and legs while working in the garden They didn't heal like they did when I was younger. They turned bright red and now I am left with raised purpleish scars where the scratches were. I had a recent physical and the doctor said I'm in good health. I'm 52 yrs old. Seems odd.
I have a similar problem. Every little bump and scrape seems to leave a scar behind. This NEVER happened before I developed Peyonie's. I have not injured myself since starting LDN. I am hoping that LDN will alleviate this nasty phenomenon. I am convinced that this is being caused by the same underlying factors that are causing Peyronie's and my other weird problems. - George
Quote from: hornman on December 21, 2009, 09:00:01 AM
I just thought I would report some other recent scarring I've got going on. This past summer I got some very minor scratches on my arms and legs while working in the garden They didn't heal like they did when I was younger. They turned bright red and now I am left with raised purpleish scars where the scratches were. I had a recent physical and the doctor said I'm in good health. I'm 52 yrs old. Seems odd.
Hey,
This is a pretty basic question but I would like to get confirmation on what a dorsal curvature is vs. a ventral one? Dorsal means on top (Like our spine on our back vs our stomach), so does that mean it is an upwards curvature? It's interesting because if it is, it seems like from the studies that I have been reading (Penotx study from Iran, FastSize pilot study etc.) that a lot more people have dorsal curvatures. Anyways can someone confrim this? Thanks,
Bart
bart15,
I don't have any confirmed data, but it is my understanding that the curvature is more often in the upwards direction.
Hi there
Please help my boyfriend may have Peyronie's Disease, he has a slightly bent penis (nothing major) and finds it hard to keep his erection, he gets one then it goes.
I was wondering if he did have it , is there a cure? I have read you can have an operation. Does this operation allow for normal erections to occur after the op and will it fix the slight bend?
Many thanks
Sebby:
Sorry to hear that your BF might have a problem with Peyronies Disease. You have come to the right place to get some assistance with his case. You should just browse through all the boards listed on the home page. The home page for the forum opens as you log in.
There are many boards that list the many and varied topics and/or subject matters that you can browse through to learn all you can about Peyronies Disease, the whys and wherefores that you might interest you. Just open the board for a subject and search through the list that comes up then.
There is a myriad of subjects that pertain to the symptoms you list in your post. So, do some homework by searching out as many of the topics as you can to see what may apply in his case.
Let us know if there is any specific question you might have after reading up on the subject. We are here to help in any way, so feel free to ask any and all questions.
Regards, Old Man
Hi Sebby.
Also his erection going away may be due to anxiety about how he looks. It is possible that this is simply a mild congenital curvature and he is nervous about how you will view it. Or, it could be a new painful problem with pain "turning off" the signals for erection and him really needing to get medication to get things turned around.
Although you could provide more information and thus get more help from us, it might be best to try the following (you may have already done this!):
Tell him that you are worried about him and love him and that you love his penis and sex with him (reassurance of this helps!)
Tell him that you want to see if there is any problem that he is worried about. Tell him that you found this site and suggest it might be helpful to him.
Hang in there.
Tim
Until recently, I would rarely dream, or at least rarely remember them if I did. I have been on the PAV cocktail for several months. Three weeks ago, I started 50 mg topical testosterone gel daily. Last week, I added 500 mg quercetin twice a day (breakfast & supper). Now I am having vivid dreams nearly every night. I don't know if I am just sleeping much deeper, or if this is some unreported side effect of some drug or supplement, or an interaction. The only thing I have read is insomnia and stomach upset were common with trental, but I have not experienced them. I have long been taking 25 mg benadryl at bedtime.
The dreams are not unpleasant, just a very sudden change for me.
Has anyone else experienced something similar?
I have very strange dreams every night, because of my Lexapro. You wouldn't happen to be taking any ssri's would you?
Looks like testosterone can be involved in vivid dreams.
Hey guys:
Just a note about the dreams you are having. Libido has a lot to do with getting dreams whether or not they are connected with sex. My experience over the years has been like this: the more I am involved in sexual activity, the less "wet dreams" I have and less sexual activity brings on more dreams. Some are rather weird. At times, I dream that my father and I are out on a date with only one woman together and we both have sex with her back to back with each other. This is very strange since he was very devoted my mother and as far as I know never strayed from the bedroom, etc.
He passed away when I was 17 years old way back in 1947, so it is somewhat weird that I would be having any dreams at all about him, much less having sexual activity in any way with him present. He was from the "old school" of sex education and was rather reserved about even discussing it with his sons.
Anyway, my point is, don't worry too much about dreams of any kind unless they become obsessive to the point of causing anxiety problems. At that point, one should get medical help.
Old Man
Hi all,
I'd be interested to chat in real time with any others with Peyronies Disease/ED who would like to. I've opened a chat room at chatzy. Apparently I can't post a link here so message me for the link to the room.
richp
RichP:
Sorry, but we don't have a chat room on the Peyronies Disease forum. We use the private message form to talk to each other as we deem it more efficient overall. Links are not allowed to be posted as you say unless it directly relates to Peyronies. Suggest you go to the rules section of this forum and get familiar with the whys and wherefores of what we do here and what is expected of any and all members when they join.
Posts that are made should be directly related to the subject matter as listed in the various boards of the home page. You can open each board by clicking on its title. Once opened, there is a list of topics/threads that are available for posts pertaining to each subject matter. etc.
Welcome aboard if you can comply with our set of rules.
Old Man
Hi guys, I'm not new to the forum, but I forgot my password and had to sign in under a different name.
So tell me, has anyone heard of Peyronies affecting white blood cell count?. My count is consistently low, although only one-tenth below normal, and I read that abnormal scarring could be the cause. What do you all think about this?
Low white cell count can be associated with autoimmune processes in the body often manifesting as systemic inflammation, a perfect setting for Peyronie's. But it can also be associated with any number of other issues. - George
Looking back over my tests I see that my WBC numbers have been borderline low, with the most recent at 4.3 10E3/mcl and lymphocytes at the higher end of the range at 41%. It will be interesting to see whether my Low Dose Naltrexone regime has changed anything.
Interesting observation. I checked my own for the last several years and the WBC ranged from 3.81 to 4.61. I do not remember the doc ever commenting one way or the other on these values.
Quote from: slowandsteady on March 05, 2010, 05:20:53 PM
Looking back over my tests I see that my WBC numbers have been borderline low, with the most recent at 4.3 10E3/mcl
RichP - In my view it would be difficult to make real time chat work, as members tend to come online at a time that is convenient for them. Many men use this forum as a way to express their thoughts and feelings about peyronie's, so from a personal perspective I'm not sure that I would like to regurgitate that process.
Perhaps if you become a member of the community, you may eventually be able to talk to people on messenger programs should they feel the inclination to use that method of communication.
Thanks!
RichP:
Another thought just occurred to me about the chat room. Most guys/gals that use a chat room also have web cam setups that allows for photos to be transmitted. This would allow for our privacy to be breached by showing photos of ourselves. I am not saying that any and all would have this capability, but overall it would allow any who had the capability to do so. The private message center on the forum allows for personal information to be exchanged so that only the sender and the receiver sees the information.
As stated before and in the post by newguy there is probably little chance there would b enough guys on line at the same time to allow for much activity, etc
Anyway, seems like it did not catch the eye of many guys.
Old Man
I think that all of this is not surprising. I think that low ranging white cell counts are closely tied to systemic inflammation. And systemic inflammation, of course, is tied to all sorts of other nefarious things including cancer. - George
Quote from: George999 on March 06, 2010, 12:28:06 PM
including cancer
I would have been OK if you would have omitted those last two words. :-\
Brooksbro:
Unfortunately, George is right about the WBC with cancer. Sad, but true. All of us who have had prostate cancer and survived it, know that the blood is a very vital part of beating the mess. The white and red must be in balance to achieve any success with most any malady.
Wish there were more research into cancer than there is, but the research money is just not there. The same could apply to Peyronies Disease if there were more money, etc. Cancer does get much more though.
Old Man
I wish we had an area for posting recent additions to the literature (I get automatic updates from Ovid that send me any new abstract for search terms related to Peyronie's Disease).
Anyway, here are two new ones. The first looks at sonographic data to see if it has predictive abilities of any sort regarding progression of disease to "requiring surgery" (only calcification suggested that outcome). The second shows that at least some urologists are trying to clean up their act and argue for better multi-center trials instead of these absurd "I saw 18 patients and here is what happened" articles the Peyronie's literature is full of.
****************************
AU Breyer BN. Shindel AW. Huang YC. Eisenberg ML. Weiss DA. Lue
TF. Smith JF.
FA Breyer, Benjamin N. Shindel, Alan W. Huang, Yun-Ching.
Eisenberg, Michael L. Weiss, Dana A. Lue, Tom F. Smith, James F.
IN Department of Urology, University of California San Francisco,
California 94143-1695, USA.
TI Are sonographic characteristics associated with progression to
surgery in men with Peyronie's disease?.
SO Journal of Urology. 183(4):1484-8, 2010 Apr.
AB PURPOSE: Traditionally, diagnosis and treatment plans for Peyronie's disease have been based on history and physical
examination. Penile ultrasound provides rapid, anatomical information to establish disease severity, and to monitor progression and response to medical therapy. We determined the relationship between ultrasound characteristics and progression to surgical intervention in men with Peyronie's disease.
MATERIALS AND METHODS: We conducted a retrospective cohort study of 518 patients with Peyronie's disease. Patients completed a Peyronie's disease specific questionnaire detailing medical history, health related behaviors and Peyronie's disease characteristics, and underwent sonographic evaluation of the penis. Measurements of subtunical calcifications, septal fibrosis, tunical thickening (tunica thickness greater than 2 mm) and intracavernous fibrosis were made. Progression to surgery was determined from the medical record.
RESULTS: In this cohort (mean patient age 53.8 years, range 20 to 78) 31% of patients had calcifications, 50% had tunical thickening, 20% had septal fibrosis and 15% had intracavernous fibrosis. Overall 25% of the cohort progressed to surgical intervention after an average followup of 1.25 years (range 0 to 7.6). Patients who underwent surgery were more likely to have subtunical calcifications present at the first clinic visit (OR 1.75, 95% CI 1.16-2.62). No other sonographic characteristics were associated with progression to surgery. After adjustment for age, marital status, degree of curvature, additional penile deformity, difficulty with penetration, ability to have intercourse and prior treatment for Peyronie's disease, calcifications were strongly associated with progression to surgery (OR 2.75, 95% CI 1.25-3.45).
CONCLUSIONS: In a large cohort of patients with Peyronie's disease the presence of sonographically detected sub-tunical calcifications during the initial office evaluation was independently associated with subsequent surgical intervention.
Copyright (c) 2010 American Urological Association
Education and Research, Inc. Published by Elsevier Inc. All rights
reserved.
PT Journal Article. Research Support, Non-U.S. Gov't.
<2>
UI 20092447
AU Porst H. Vardi Y. Akkus E. Melman A. Park NC. Seftel AD.
Teloken C. Wyllie M.
FA Porst, Hartmut. Vardi, Yoram. Akkus, Emre. Melman, Arnold.
Park, Nam Cheol. Seftel, Allen D. Teloken, Claudio. Wyllie,
Michael.
IN Porst20354@aol.com
TI Standards for clinical trials in male sexual dysfunctions.
[Review] [145 refs]
SO Journal of Sexual Medicine. 7(1 Pt 2):414-44, 2010 Jan.
AB INTRODUCTION: Clinical trials in male sexual dysfunction (MSD) are expanding. Consequently, there is a need for consensus standards in this area.
AIM: To develop an evidence-based, state-of-the-art consensus report on standards for clinical trials in MSD.
METHODS: A literature review was performed examining clinical trials in erectile dysfunction (ED), premature ejaculation (PE), delayed/absent ejaculation, libido disorders/loss of desire, hypogonadism, and Peyronie's disease, focusing on publications published in the last 20 years. This manuscript represents the opinions of eight experts from seven countries developed in a consensus process. This document was presented for peer review and debate in a public forum and revisions were made based on recommendations of chairpersons to the International Consultation on Sexual Medicine.
MAIN OUTCOME MEASURE: Expert opinion was based on the grading of evidence-based medical literature, widespread internal committee discussion, public presentation, and debate.
RESULTS: According to experience and recent publications in dealing with clinical trials in sexual dysfunction, recommendations have been made for conducting trials in patients with ED, PE, delayed ejaculation, libido disorders, hypogonadism, and Peyronie's disease.
CONCLUSIONS: It is important that future clinical trials are conducted using standards upon which investigators can rely when reading manuscripts or conducting new trials in this field.
[References: 145]
PT Journal Article. Review.
Hi Folks:
My name is Larry Holcombe and I'm sure most of you don't know me. Hawk does as we are old friends and go back to the beginning of this site. I've been away for a good while. I spent a lot of time here in the beginning and I'm delighted to see that the site and forum is running better than ever. Hawk you've done a wonderful job my friend, you had the staying power and I didn't. My hat is off to you.
I'm going to look around a bit and see what is new in the way of treatments. Perhaps I'll post from time to time if I can say anything of value.
I wish all of you the best in your fight with this devastating and misunderstood disease.
Larry H
Note: Larry is back in under his old profile "Larry H" Hawk
Welcome back Larry! I think I remember you from way back when. You used to be really active around here. Nice to see you back again! - George
Larry:
Hey Man, long time no hear from. Hope that things have turned out for the best in your adventure since we last were in contact with each other.
I am sure that you have had quite a plate full with all the things you had in mind during your move. Glad to see you back and in the saddle with us again.
Shoot us a PM sometime and bring us up to date during absence.
Best to you guy! Old Man
Larry,
A huge welcome! It is great to have you back Larry. You have always been a voice of influence and reason in the Peyronies Disease community and a great friend in addition.
Glad to see by the link in your profile (under Larry H) that you have been successful in accomplishing some long-term personal goals. ;) WAY TO GO LARRY !!! http://www.larryholcombe.com/
Greetings,
Digging around on the internet I have come across some interesting studies regarding the Smad protein family and their association with TGF-Beta.
Here is an example article I found: http://jasn.asnjournals.org/cgi/content/abstract/13/6/1464
From what I have read there seems to be a theory that by reducing Smad2 with an over expression of Smad7...this would result in a blocking of the fibrotic process.
Has this topic been covered here on the forum? Does anyone here understand Smad Proteins and care to share what they may know about this?
Thanks,
Briden
Does anyone know how people get away having their tool pierced or tattooed and not get Peyronie's? Just something that has entered my mind a couple of times.
Thanks fubar
Hello,
Although I have not seen a specialist yet. I am 99% sure that I have Peyronies Disease. I have noticed this condition for about 6 months now.
In short I have a lot to learn.
My first question is; should I get my family doctor to be aware of this site?
I will have many more.
brian53:
Welcome to the forum and sorry to learn that you may have joined the Peyronies Disease family ranks. OK, to answer your question, by all means get your family doctor to get on line with the forum. Together the both of you will learn much about Peyronies Disease, and what the members of the forum are doing about some form of treatment/therapy for it.
Knowledge about Peyronies Disease makes for an informed person, so search out any and all subjects that reach out to you. Just browse through the boards on the home page and you will find a wealth of knowledge the members have developed or researched for use by all.
Again, welcome to the forum.
Old Man
My guess would be that if it doesn't damage the tunica, no problem. I wouldn't imagine that piercings or tatoos would do that.
Dear members,
I hope im posting in the right area, apologies if im not, new here.
Has anyone suffered the above condition, i was diagnosed with peyronies in august after a pain in june, however in late august after 3 days of severe pain, i awoke erect with a 45 degrees curvature (first ever) and found that my left hand at the ring finger and pinky were spongy and had pins and needles. Also the penis had seemingly suffered a second injury in that it now flopped under the head, it had been normal except pain up to this point.
My urologist here hasnt given it much credence but today i awoke with both hands half closed tightly and again pain under both sets of fingers (ring and pinky)
Has anyone experienced this, i suspect its dupuytrens but no diagnosis yet?
Its extremely quick the onset which seems unusual?
anyway, any thoughts would be appreciated?
Also has anyone gained any normal feeling back in their penis when flacid and if so is there any rule of thumb time wise? mine seems dead..
John
John:
Welcome to the forum and sorry to hear that you suspect you have Dupuytren's Contractures. I to suffer from DC, Peyronies Disease (Peyronies Disease) and Lederhose conditions. Had surgery on my left to correct a very bad contracture of the pinky and ring fingers in January 2009 which seems to be coming back again with the drawing effect, etc.
Yes, it has long been suspected that all three of these disorders are related. Several of us on the forum have suffered from them for many years now. So, just be sure that you get checked out by a qualified doctor that can properly diagnose at least the Peyronies Disease and if possible the other disorders as well.
Regards, Old Man
Hi all,
I've posted here before, but this is a more general inquiry. I want to know if it sounds to you all like what I have is Peyronie's, and what I can do while waiting to confirm that.
HISTORY/WHAT I'VE GOT
About three weeks ago, I was masturbating. It was taking longer than usual to finish, but I'll be damned if I wasn't extremely happy about that. Suddenly, something feels off. My penis goes limp, red on the underside, and painful to touch. Any attempts to stimulate it cause prickling pain through my penis, testicles, and even my thighs. A visible lump near the head, on the underside of my shaft, is visible. I'm confident it was never there before. Furthermore, it seems swollen at the based, near where my penis meets my testes. This is also new, as it used to be perfectly straight and even.
The next day, the lump is still around, but I'm able to get off successfully. I won't always be this lucky. On and off over the next few weeks, I'll have "partial erections" where the blood only fills up to the lump, and the head of my penis remains limp. Most days I can get it up and off successfully. The size of the lump varies from day to day, some days barely being visible, if at all. In the interim, my penis seems harder and smaller when flacid than it used to be. I often feel discomfort from it in this state. Over time, I notice a slight leftward bend that is only visible when I'm soft. When I feel pain, it is usually on the left side of the penis.
Since this first event three weeks ago, I've been having trouble getting erections. They never come on their own anymore, though I can USUALLY make them happen with considerable effort. My morning wood is rare, fleeting, and weaker than it used to be. I'm a very anxious person, though, and have been especially so about my ability to get up.
Today, after not being able to get even slightly hard all day, I manage to slowly build up an strong erection. I think, now, that I've got the tiniest amount of upward bend, but I may be imagining it. My leftward bend is still virtually invisible when hard. But I notice that I feel serious discomfort touching the left side of my shaft, near the glans. It feels like there is something hard underneath. Well, I can't say that I distinctly felt some"thing" underneath, but the left side is definitely more resistant to pressure than the right. I decide not to insist and let it go. I'm still feeling odd on the left now.
So, does this sound like a harmless injury, or the sinister Peyronie's disease?
I've already seen several doctors since this problem first came up. But, as any other Montrealer here knows, our medical system is absolutely terrible. I'm between MDs, because I clung onto my excellent pediatrician literally until I could no longer legally seek her aid. I'm turning 19 in a few weeks and there's a shortage of MDs in this country. So I've been relying mainly on walk-in clinics. I made a mistake, though: Since I've been under a lot of anxiety, related to school, university applications, and now, my penis, I come to doctors with a barrage of other symptoms. Since the penis thing is extremely embarrassing to talk about, I mention it almost as an afterthought and in not nearly as much detail as I have here. Still, all three doctors have at least taken a look at the little guy. Still, they've all done about the same thing: Poked and prodded around for about ten seconds, and then told me that my penile problems, like most of my others, are probably psychosomatic. Now I know my body, and this is not imaginary. I'd love to go to a urologist, but I need a referral from and MD, who are all convinced I'm just crazy.
WHAT SHOULD I DO:
I'm planning to keep pursuing this, but I can only do so at so fast a pace. Considering waiting rooms waits last 2-3 hours on average, and that's if I arrive at a good time, and I've extremely busy with school, going to the doctor once a week is already very difficult to work in. To me, it seems like I've got some Peyronie's going on, and I want to mitigate the damages as best I can, even if it turns out I'm fine, until I can find a urologist who will give me a satisfying confirmation/disproof that what I have is Peyronie's and I can start getting prescription meds.
So, what can I take/do to try and keep the little guy from getting too bent out of shape (literally)? What options are readily available to me, given that I live in Quebec? I want to start fighting this as soon and as aggressively as possible, despite my pretty meager means.
Furthermore, if anyone knows any Montreal urologists and can hook me up (I'm sure that's not how it works, but it's worth asking) or at least recommend one, it'd be greatly appreciated.
Thanks so much,
TheLastRobot
Sorry to keep bombarding you guys with text, but there are some details I missed and some information to add.
First of all, today I had my first spontaneous erection in weeks. I can't begin to describe what a relief it was. It wasn't full, and it went away after a while, but I had it - better yet, I had two. I don't know how long this blessing is here to stay for, but maybe it's just cause I'm a little more relaxed, seeing how many people here are able to prosper in what I consider to be a worst-case scenario.
There's a detail I've been frequently forgetting to mention in my accounts of what's going on: There's not just a lump in my shaft. Whenever it shows up, it's accompanied by a similar protrusion where my shaft meets my testes, that goes down into them. It seems to go into my taint, as well. It seems like some kind of tube. I can't claim to know much about penile anatomy, but I do know that this tube, whatever it is, didn't use to stick out this much, and feels similar to the lump itself. It hurts to the touch - it feels hard, and maybe swollen. I think it may connect to my prostate, but what do I know. Also, I occasionally notice a white discharge from my penis after I pass a bowel movement, which corroborates the prostate theory. Since these things are not, to my knowledge, consistent with Peyronie's, I can't help but wonder if everything I'm going through might have more to do with this swollen tube, whatever it is. Any thoughts?
Also, I can't help but wonder if I may just have injured the little guy, and my constant attempts to make it work normally are just slowing down the healing process. I'm considering just leaving it alone for about five days to two weeks and seeing if I notice any improvement, but since the predominant philosophy here is "use it or lose it", I was wondering if leaving it alone for so long might be a bad idea.
Quote from: TheLastRobot on October 05, 2010, 03:22:39 AM
To me, it seems like I've got some Peyronie's going on, and I want to mitigate the damages as best I can, even if it turns out I'm fine, until I can find a urologist who will give me a satisfying confirmation/disproof that what I have is Peyronie's and I can start getting prescription meds.
TheLastRobot
You have stated a number of symptoms.... so I'm curios which ones you believe are Peyronies Disease related. Lumps that come and go don't equate to Peyronies Disease for me. It almost seems like you have an injury of some sort. Maybe giving yourself a break for a bit and letting things heal up. I would consider going back to the clinic and make sure you point out the issues with the fluid discharge and the lumps that come and go. Listen to what the say and don't jump to any type of pre diagnosed conclusion.
Les
lwillisjr:
I guess it's the fact that the lump doesn't seem to be consistent with much else. I did hours of scouring the internet the first time I noticed it, hoping for some kind of indication as to what it might be, and a lot of sources pointed to Peyronie's as a possible cause of lumps in one's penis. Furthermore, a lot of accounts of Peyronie's didn't sound too far off from what I have. Basically, this is the option I've been investigating the most because it sounds the closest to what I have.
Part of the problem is that I've read that it's possible to have Peyronie's without any noticable curvature. Terms like "nodule" and "hourglass" penis kind of mean nothing to me, so a lot of it is up to guessing. These gaps in my understand are the reason I've seen fit to describe what I'm going through in all too much detail.
The injury theory seems to make sense, and rings awfully close to something described in a thread in the progression section, except that the person there is uncircumcised whereas I am cut. His last post indicates that he believes he's just dealing with an injury, and he hasn't written anything since, leading me to believe he may be right. Here's hoping it's the same for me.
You'll read everything on the internet... so be careful what you read. Generally lumps caused by Peyronies Disease don't come and go on a daily basis. The lumps appear and stay. That's why I suggest you get these checked out.
Also.... your statement about it being possible to get Peyronies Disease and not have a curve. You'll find some disagreement on this one as well. If you read medical journal documenting Peyronies Disease, they will define this as
"Causing a curvature due to trauma or internal scarring of the penile tissues". So one could argue that by definition that you don't have Peyronies Disease unless you have a sudden curvature. But there are others here who have documented hourglassing. This is consistent with Peyronies as it is caused by scarring equally all the way around the Tunica. So while you may not have a curve in this case, the scarring is present.
And finally, many equate Peyronies Disease with erectile dysfunction and these are not necessarily related either. It sounds to me like your anxiety issues may be working on your mental state and could be greatly impacting your ability to achieve an erection.
I'm not a doctor..... just my opinion.
Les
Lastrobot
Probably would be a good idea to get a good doctor or urologist to listen to you.If you do not have a deformity and you have pain.Peyronie's Is usually defined by deformity and some pain.
Discharge and things felt like tubes or anyhing close to your body could mean something else entirely .Please make an effort soon to see another urologist and get to the issues of your troubles and I recommend this to a couple of others new here.
If you don't have Peyronie's good but you may have something more life threatening. And this would not be good so get to the bottom of what is going on with you and do not waste time doing so.
Good luck and get back to us on what is going on with you!
Fubar
Lastrobot:
It can be difficult when someone who might have other issues tries to get the attention of the medical profession for a condition that is not yet stable. This can be frustrating and stressful. It sounds like SOMETHING is happening, and no matter what the potential causes, that something should be investigated. A GP at a walk-in clinic will not be the person most likely to make a good diagnosis, but you must get their attention long enough to get a referral to a urologist.
Glad you found some hope/comfort in our stories. Allow me to offer a few more details that might relate to your situation.
First, you indicate that the doctors may be treating you as if you were a hypochondriac. My father was a hypochondriac. Instead of being treated for it, he was inappropriately treated for the imaginary or exaggerated conditions. He spent much of his 30s and 40s as a Valium zombie. Finally he threw away all the pills. He is now 84. So when doctors think they might be dealing with a hypochondriac, they are right to be careful about how they proceed. They are NOT right, though, to assume that every complaint might stem from the more general condition.
I went the other way. Terrified that I might be seen as a hypochondriac, a did NOT go to doctors unless I absolutely had to. And I endured incompetent doctors longer than I should have. I had a doctor who thought I was imagining illness - because some of the symptoms were the same as stress-related illnesses. He had been my doctor for about 10 years. So for 2 years I got sicker and sicker - my nails were shredding, my hair was falling out, I had gastric problems. I was sure I could feel something moving inside me. I had done a lot of travelling, and I thought I had a parasite. My doctor said it was all in my head and that we have no nerves in our intestines to feel that sort of thing. I am a former dancer - I know my body.
Then I showed up at the hospital with a foot-long segment of a bizarre tropical parasite in a jar. Yes, it had grown to the size where I finally grabbed a hold of an end of it that finally made its appearance out my rectum. It was about 2 inches across. I have never been so scared. And angry. I pulled - but the worm broke off and I could feel the rest inside me. The folks at the hospital were very excited to see this. My doctor was on vacation, so he didn't see it.
They killed the parasite. A year later I had some of the same symptoms with a new complication: I couldn't speak properly. I could write, and I could think, but when I tried to speak I had trouble making the words come out in the right order. My doctor said it was stress. He initially refused to prescribe a parasite test. I insisted.
Yep - the tests showed I had a protozoal parasite that had gained critical mass in the speech centres of my brain. So it WAS in my head this time - literally! But my doctor had treated me like I was a hypochondriac.
We argued about what drug should be used. I had done the research and knew which one would pose the least risk to my system. He insisted on the most common treatment, which is really hard on the digestive system. He absolutely refused to give me anything else. Since I needed to be treated - everyone was thinking I was crazy because my spoken sentences made little sense - I finally agreed.
The drug kicked me out of remission for unsuspected celiac disease. So I got sicker instead of better (except my speech centre recovered). I ditched the doctor, went to a new one who caught the celiac disease. Since then (about 8 years ago) I have only really had to see a doctor for broken bones and injuries from car accidents - except for the Peyronie's.
I should have been more aggressive with my doctor when my Peyronie's first started 10 years ago. Appropriate treatment at that time might have saved me having to go through the surgery route this year. But once a doctor starts treating you like ALL your complaints are psychosomatic, you need to find another doctor. Even if SOME of your complaints are psychosomatic, that is no reason to assume that ALL of them are. My life was miserable for years because the doctors did that to me - and without cause.
Now, here's a suggestion for you if you think the doctors might be right about some of your complaints being psychosomatic or triggered by hypochondria: biofeedback. People who are so sensitive to their bodies that every difference is magnified and seems to require attention should be encouraged to learn biofeedback. It might help determine which symptoms might require a doctor and which can be better regulated by the patient. Check it out.
WOW, I'm going to take caution the next time I read one of your posts brightdog. That is the most craziest story and I think I'm going to have nightmares every night the rest of my life! I thought that kind of stuff only existed in movies like hellraiser or nightmare on elm street. Sorry to hear you had to go through that and my hat goes off to you.
The last robot, definitely get those lumps checked and the pain you are experiencing in the left side of your shaft is probably some trauma. I have the same thing, soreness along the left side of shaft and a curve when semi-erect but no curve when fully erect. Now I believe my injury was sustained when I was younger and has been catching up to me in my older years. I also has some stinging along the bottom of the glan, which kindov feels like a mild badder infection all the time.
It's amazing how those injuries we think heal when we are younger, actually just stay hidden until we get older. Do you sleep on your stomach? This was my problem when I was younger, I would squish my boners into my mattrass all night long, not recommended for our precious penis.
TheLastRobot - I do sometimes think that those possibly predisposed to peyronie's can experience issues while doing something as innocuous as masturbating. I would certainly get it checked out, and get on pentox, start with the VED if that is deemed a good cause of action. It's important to be as careful as possible in relation to therapy and sexual activity.
BrightDog - What a horrifying tale (with thankfully a positive outcome). I totally agree that sometimes it's important to take your health into your own hands. If peyronie's has taught me anything, it's to make sure that I stay as healthy as possible and to do my own research before visiting the doctor.
All physicians are only "practicing" medicine, and they DO make errors in diagnosis and treatment. It is a reality that 50% of them finished in the bottom half of their class. LOL At least for now in America, we can (most often) choose our physician.
Hey all, thanks again. Another update:
I got a good, firm erection today and decided to inspect it fully to see what's going on. I've definitely got some leftward erections, but what worries me is that for all I'm sure of I may have always had it but never paid much attention. What's scary about trying to figure out if I have certain symptoms is now I'm looking for them. The things I find may have always been there but not indicative of anything bad.
On my last visit to the doctor who, incidentally, has become my new MD, he sent me for some blood tests which I only got done this morning. If they come back negative I'm planning to return to him and tell him in more detail what's going on down there. I kind of glazed over the penis things and put the emphasis on other health-related concerns I've been having. I've also, like crashbandit, been feeling some pain in my glans which does feel like some kind of infection. I've also been feeling some discomfort in my "posterior" lately, so I can't help but wonder if I may have got some kind of infection in there. I've hear prostate and urinary tract infections often come hand in hand. Does anyone have any experience with this? Are urinary tract infections prone to cause lumps? Regardless, if the tests come back negative, I'm going to ask for those possibilities in particular to be looked into if they weren't covered in the blood tests. That should, hopefully, get me to a urologist.
Also, crashbandit, I do indeed sleep on my stomach. It never occurred to me as being potentially problematic. I'll start sleeping on my back or side from now on and see if anything changes.
As for pentox and VED, my biggest problem with those is that one is expensive as hell and the other can't be purchased over the counter. I'm unemployed and all my money comes from my father who, though a very supportive person, is very pragmatic when it comes to health and, being aware of my tendency to self-diagnose, tends to favor the opinions of doctors. Convincing him to give me money to buy a penis pump is extremely humiliating and asking him to order me dick pills over the internet is hardly better. I'm feeling a little stuck here.
Quote from: BrooksBro on October 08, 2010, 06:59:45 AM
All physicians are only "practicing" medicine, and they DO make errors in diagnosis and treatment. It is a reality that 50% of them finished in the bottom half of their class. LOL At least for now in America, we can (most often) choose our physician.
We choose our own here in Canada, too. Which I only mention because for some reason the anti-health-care-reform campaign in the US seems to give people the impression we can't, and that "socialized medicine" means death panels etc.
Brightdog:
Check with your friends and cohorts across the Atlantic in the UK. They have a very different viewpoint about timely appointments and long waiting times to get one. Also, trying to even get an appointment with the doctor their choice seems to be a problem.
I am sure that our members in the UK can set the record straight about the above if I am wrong. But what I mentioned is being related to me by at least some of our guys there.
The American version of the health care overhaul is driving many health care providers out of business already and many more doctors and health care specialists are taking a good hard look at the new system.
The above are strictly the observations and opinions of the writer only.
Old Man
Quote from: Old Man on October 09, 2010, 02:31:13 PM
Brightdog:
Check with your friends and cohorts across the Atlantic in the UK. They have a very different viewpoint about timely appointments and long waiting times to get one. Also, trying to even get an appointment with the doctor their choice seems to be a problem.
I was not referring to the UK. The sources I was hearing from in the US (USian residents) were telling me these things about Canadian health care - and they were fabrications.
Quote
The American version of the health care overhaul is driving many health care providers out of business already and many more doctors and health care specialists are taking a good hard look at the new system.
I am having trouble finding a credible source for this. Since the reform to date is more about providing access to insurance (with other reforms being phased in), I am not sure I see how the providers have been affected yet - since they are still getting their money. It is true that the entire US is in a recession, and private medicine is at the mercy of a populace that can pay, so I would imagine there has been some economic hardship - and I understand there has been some caused to employers who are paying premiums for their employees - but I am not finding credible links that can separate the general economic crisis from the effects of the reforms.
I found a medical staffing company in Florida that went bankrupt - but the news reports make it clear it was because of the general recession and hospitals hiring fewer temps from them. Maxicare in California was building debt since 1986 and suffered major slides down BEFORE the health care reforms, eith rumours of impending bankruptcy prior to 2008. In fact, an admittedly cursory scan looking for health-care related bankruptcies in the US isn't turning up any related to the reforms, but lots related to the NEED for reform. Including a huge number of bankruptcies previously being caused by medical bills (that was the finding of a Harvard study prior to health care reform).
Lots of Canadian medical personnel still move to the US because they can make pots more money. So perhaps the reports of health care providers going out of business are exaggerated. Unfortunately there is more than a little political posturing happening as the privateers of health care try to make sure their profits continue unabated. When I travel in the US I watch US television and hear the most outrageous whoppers on news and public affairs shows. I have no idea how anyone down there can sort it all out when the media can't be trusted to do a good job.
The above are strictly the observations and opinions of this writer too!
Brightdog:
Since I am apparently much older than you and have lived back in the late 1920s and early 1930s when we had universal health care in the States, health care was very limited and poor. One had to go to a clinic run by doctors that were just out of medical school and had to do their time as interns in the public health clinics. The service we did not get caused a lot of premature deaths when maybe a visit to a good doctor would have saved their lives.
My reference to the UK health case program is based on what members of this forum state is the case when they try to get good medical health care. Their NHS just does not seem to come through for them as they state.
Your country may or may not have the same program, but I think that the United States just does not need the Federal government telling me or any other private citizen where they get their health care.
As far as your reference to a credible source of information relative my comments is like blowing smoke in the wind. I don't have to support it with any source, I know first hand what is in store for the general public here.
Anyway, you have your opinion and I have mine, so the subject is closed as far as I am concerned. I will not address this subject again on this forum or in any private message/email either.
Old Man
Quote from: TheLastRobot on October 08, 2010, 06:35:12 PM
Hey all, thanks again. Another update:
Also, crashbandit, I do indeed sleep on my stomach. It never occurred to me as being potentially problematic. I'll start sleeping on my back or side from now on and see if anything changes.
It might be hard to not sleep on your stomach but for the sake of your penis! Plus it also saves your back and neck a ton too.
Wow -just catching up here.
Um, in no particular order...
Act sooner than later for problems and move along to better listeners if the docs don't listen.
No one I know is going out of business as a doc. But millions of Americans don't have access to good care and need it - well, actually they get great care - when they go to Emergency Rooms and demand it, and get treated for "emergency conditions". We then pay for it with tax dollars. Since those charges are flat fees, they average about 5-7 times more than the usual negotiated fees with HMOs and insurance companies - and so the money is either lost by the hospital or paid by tax dollars at a higher than average rate. Not a good system for provision of basic health care.
Docs can always make (more) money by having a private practice on the side, and richer people will pay out of pocket for those services. Happens in France, Canada, Belgium - everywhere.
Tim
Hmm... usually I can follow most of the medical literature on this topic, but that abstract was over my head...I guess the important question is: are their any therapies that target smad proteins? Other pro-inflammatory molecules can be targeted with things like pentox (in theory- and it appears to work for some in reality)...but I haven't seen these proteins discussed here.
This discussion has gone on before around here. You can review it here:
https://www.peyroniesforum.net/index.php/topic,22.msg8543.html#msg8543 (https://www.peyroniesforum.net/index.php/topic,22.msg8543.html#msg8543)
I just crafted a pretty detailed message to 'confused', which immediately vanished when I tried to preview it. I do not have the energy to start over. The error message says my "session timed out while posting." So the more time one takes trying to put together a carefully worded message, the greater the chance it will be erased by the software? Very frustrating. I just joined, this was my first post, and largely an exercise in futility.
Edified-
If it was an important message, repost it! It seems like everyone on this forum has one thing in common- dealing with a disease that we are all trying to figure out. Sorry you "timed out" for your post, but it sure seems like there are greater concerns that we are dealing with- loss of manhood, troubled relationships, and how to rid ourselves of this curse!!!!!
The message wasn't erased as such. When a session signs it, it means that you've been logged out from a forum due to inactivity. It has on occasion happened to me on various forums. If I write a long post, I make sure to 'copy' it, just in case there is a problem. That way I can log in again and repost (paste) it. Sorry to hear about it though, I know it's an irritating thing to happen. Don't let it dissuade you :).
I was just reading through some science news, and found an interesting article. Some scientists were trying to understand a disease called Fibrodysplasia Ossificans Progressiva, a "genetic disease in which acute inflammation causes soft tissue to morph into cartilage and bone." There is an article about it at physorg.com.
Given the calcifications caused by Peyronies, I wonder if the mechanisms are related. It seems that given a mutated gene (or one of two specific growth factors, TGF-beta2 and BMP4), the cells revert to an adult stem cell like stage, where they can differentiate into cartilage and bone tissue. There is no cure for this disease, but understanding the mechanisms could lead to progress.
Interestingly, my urologist recently told me (with more than a little hint of horror) that during surgery for peyronies he removed a a sizable piece of bone from one of his patients.
Same here. Dr. Leu up at UCSF Medical even pulled out some pieces of bone from some sample jars to show me.
So My local urologist that I saw a month or so ago wants me to come in for a cystoscopy, originally because I had blood in my urine when I gave a sample. They sent me to get an ultrasound and ct scan and everything came back normal. Now I know the reason i get blood in my urine is because I have plaque from my Peyronies Disease pushing on my urethra, and that's why my corpus spongiosum doesn't "fill out" all the way. My concern is that many men say this procedure can aggravate Peyronies Disease, so I'm not sure if I should do it or not. Does anyone have experience with this prcedure?
Casey, Blood in the urine can come from the kidneys due to any number of reasons or from the bladder OR from the prostate or from the urethra. You need to ask DIRECTLY what the urologist expects to determine by a cystoscopy. Some major concerns, such as bladder cancer and urinary tract cancer in general, for that matter can be resolved these days by a pathology study of the urine and no longer require cystoscopys. Problems with the kidneys or prostate certainly wouldn't be diagnosable by a cystoscopy anyway. I have had numerous of them. They are really no more invasive than a colonoscopy, but why have one if you don't need one? Unless the doc can come up with a justifiable reason, I would be politely asking for a second opinion. - George
Thanks, the uro told me it's not my kidneys or my bladder, since he could see they were normal from the ct scan. He says he still wants to do it just to "see and make sure everythings ok". I don't mind getting it if it's neccesary, but like you said, why get something shoved in there if there's no need for it.
The best thing for you to do would probably be to get a urine test WITH Cytology Report if you haven't already. This is a test where they examine the cells contained in the urine for any strangenesses. The lining of the bladder and the urethra is constantly sloughing off dead cells just like the skin does. If you have any sort of cancer going on or even inflammation, these tests will sort that out. It is completely non-invasive requiring only a urine sample. Additionally, make sure you have a full urine analysis and blood test that includes all the kidney stuff. - George
Wishing you all a happy new year! Thanks for all the advice and encouragement. I hope and pray that 2011 will bring even more good news in the discoveries that are being made in the efforts to eradicate this condition. Thanks to you and this forum, I'm feeling more optimistic that we will eventually beat this thing and restore our physical health as well as our relationships and peace of mind.
Thanks restore. Here's hoping for a positive 2011 for all of us..
It's widely held that Peyronie's predominately strikes men of northern european descent. Obviously we can't conduct an official survey here but i was just wondering about its prevalence among men of more immediate african ancestry? I thought i inherited a predisposition toward this thing from my northern european side but it looks like the condition was handed down to me from my african side. Just interested in its epidemiology .....not that this forum's demographic is representative of the world's. If you happen to be of african ancestry please drop a line. obviously I don't want this to turn into something inflammatory..... similar inquiries could be made into the prevalence of Peyronie's among other so-called racial groups. I hope that this doesn't offend anyone and is appropriate .The african american case is particularly interesting given the severity and frequency of cardiovascular and prostate related problems they're bombarded with as compared with other racial and ethnic groups.
I wasn't able to find any discussion on this but found some articles online about how scientist believe that the p21 gene blocks regeneration. They apparently bread mice without this gene and they regerated holes that were placed in there ears as well as limbs. They then turned this gene off in mice that had it and saw the same result. Have any of you heard about this or what are you thoughts.
Certainly dreaming behavior changes with time and you are having some epic dreams.Not strange,I also have.
Sound (REM) sleep brings dreams. Testosterone levels *may* be connected with degree of sexual content. - George
I think I may have more a Vericocele roblem then a Peyronies Disease. Last night after sex and ejaculation, I had pretty intense pains in my left testicle. The pain was not a sharp pain but an intense ache throughout the testicle and pubic bone area. Also the pain did not strike me until after ejaculation. There was also major swelling in the cords that attach to the testicle. I've had this problem before and is always alittle achy but has big flare ups like this one.
It seems during or before flare ups I tend to have premature ejaculation. I don't know if the mild form of Peyronies Disease I think I may have is just a masked Vericocele. I still have the pain within the penis, which wasn't a symptom of Vericocele, I don't think.
Anybody have this problem?
insist on a bilateral (both sides) doppler ultrasound on the varicocele(s) and discuss your possible peyronie's concerns with your uro - make sure that they are an andrologist sub-specialty-type uro though.
Thanks Rich,
Have you had problems with a Vericocele?
yeah bilateral - although the right hand side (less common) only showed up on a scan. probably going to have the left one embolised at the least.
Quote from: RichP on February 13, 2011, 07:50:24 PM
yeah bilateral - although the right hand side (less common) only showed up on a scan. probably going to have the left one embolised at the least.
Have you noticed or know if Vericocele can cause premature ejaculation or cause pain in the penis?
This site can help you by giving you some relevant information..nctimes.com
Hello there, just joined the forum, small bend and a large lump on the right, bend has gone away on its own, terrific, but now have ended up with corporial fibrosis spreading all over. Before that I vericocele on my right, (feels like a bag of worms in there). lots of pain. and used hormones to gradually reduce it over two years.
I can say to anybody reading this , that YES the curvature CAN GO AWAY on its own, it took a whole year though. .. patience and waiting may bring you relief. the fibrosis doesn't seem to always happen, is truly grim if it does.
Onlyone, thanks for posting! It is good to finally hear from someone who has experienced a spontaneous remission. We would like to hear from more cases like yours. On the other hand, sorry to hear about the coporal fibrosis. That is truly devastating. I hope that you are aware that Pentoxifylline can help with that as well as with Peyronie's. The two diseases ARE related. If you can find someone who will prescribe you Pentoxifylline you may well benefit from that even yet. Ubiquinol might also help. - George
I cant believe I need to post this but the younger more immature crowd (with even more immature friends) may be able to relate. So when I go out with friends on the weekends and have a few beers they seem to think its downright hilarious to smack one another in the junk region AKA "sack tapping" (seems like middle school behavior, but these are guys in there mid 20's...sad I know). You can imagine that when one of my friends starts this downright retarded behavior and I am a target, my reaction is one of quick temper and, regretfully, retaliation. My hopes were for this to stop because I was retaliating, but this seems to have no effect. I have also tried heated verbal requests for no more, but they are just that thick headed. I am now at the point of actually debating on telling them my situation which I know will end the stupidity (they are my long time friends after all) but I don't know where this disclosure will lead. Given that they like antics like this in the first place, I feel a little apprehensive about telling them my secret and it leaking to others when they are intoxicated again. I guess my question to everyone would be, have any of you seen a worsening in their Peyronies Disease from mild blunt force situations like this? It certainly can't help the condition in any way but this is driving me absolutely nuts. This is a problem I never thought I would need to address, but sadly it is. I have lost sleep worrying about my Peyronies Disease getting worse after nights like the ones above.
BentYoung,
I would suggest you NOT tell these idiots friends about your condition. If they won't stop punching you in the balls for fun after told them to stop, they will certainly give you a hard time about having Peyronie's Disease. Having this disease is a sensitive issue: it's not something to be ashamed of, but it's also not something that should be shared with people who will certainly mock you and make you feel bad. Telling them will not spread awareness about the disease and it will not bring about a cure faster.
You need some new drinking buddies. Failing that, give the next idiot who gets too close to the jewels a good crack in the nose. I'm serious about that.
-Skjald
P.S. it's unlikely that your Peyronie's would get worse from this unless you are undergoing very serious trauma. Don't worry about this aspect and just get them to stop or hang out with some cooler people, by all means.
Dude,
How old are you?
Kids did this when I was in high school like 10th grade. I've been "sack tapped," and also got a few kids back when we were immature. I also took a shot in the testicles in a soccer game once. A few taps won't hurt you, but stay away from these kind of people and stuff. Repeated sack taps could hurt your testicles, and who knows what it will do to your Peyronies Disease. I did hear on the john tesh show on the radio one kid in Minnesota was sack tapped a lot and he lost a testicle, now his parents are suing the school district for not stopping the bullying. When I was in high school bullying was way to common, this is my main critique of the public school system which I think is otherwise well run where I live and gives you as good of an education as you want to get out of it. Bottom line is, I'd say stay away from these idiots, but if you only took a few taps it shouldn't hurt you.
Comebackid
P.S.
Drinking is bad for peyronies it made my condition worse. Try to kick this habit or limit it drastically. Sorry for this bad news! Get new friends to, anyone who is sack tapping other grown men at age 21 or above (I'm assuming since your drinking your at least that age) is a douchebag. People bully others that let them, if you dig in and look like you will fight back like hell, a lot of people will p~$$% out and go away. With this being said try to avoid people like this as much as you can.
Comebackid
There in there mid 20's REALLY?!!! Man, I don't know how immature that is sounds more retarded to me! Why would someone in there mid 20's want to touch another mans junk! Iam 38 yrs old and I would never let another person hit me in the testicles. Thats before or after my Peyronie's. Especially with this condition. If you are telling them not to hit you and they keep doing it anyhow you have three choices. One don't go out drinking with them. Two since you have already sternly told them not to touch you and they keep at it anyhow thinking its funny cause its getting under your skin. Tell them when they are sober next time anyone taps you that you are gonna break there nose. Then if they tap you while they are drunk or other wise punch them in the nose straight off. When they cuss and such tell em remember I told you if there was a next time I was gonna break your nose. Three find a new group of friends to go out with if your going partying.
Even my friends that are parents are very quick to correct there kids if they throw, swing, hit or run into someones private areas on purpose. I have one friend that knows I have Peyronies and he always is very quick to correct his kids if they start to play too rough with me involving one of them hitting me below the belt.
With this condition you really do not want any additional trauma. Remember anything negative can make your condition get worse.
Sorry for being bold and blunt but that even got under my skin a little and it isn't even me experiencing it!
Thanks all for the responses. I should have clarified a little more in my posts. These are not bullies that are mere acquaintances of mine. If a guy I barely knew came up and did such a thing, I would have little problem "cracking him in the nose" as you put it. These are people I have known and shared many experiences with for more than 10 years. I personally have never been bullied in my life and these instances are somewhat few and far between. That being said, it doesn't make their actions any more justified. Hitting another man in the junk is downright dumb and immature regardless of who is doing it. I very much value them as friends excluding these instances and am not the guy they are picking on exclusively. I am merely a part of the group and subjected to unfortunate stupidities. This a trend that I will not allow to continue by whatever means is necessary. If it means new friends, so be it. God knows us Peyronies Disease sufferers need little more to worry about. My intent was to see if there were others out there that have had similar cases of small injuries, not necessarily the same exact kind that led to changes in there Peyronies Disease.
Others here may disagree with me. I understand "buddy antics" or whatever else you want to call it. If these guys are your friends, then I would suggest you tell them about Peyronies. You don't necessarily need to tell them you have it. But I for one am all for communicating awareness of Peyronies Disease.
does anyone have a website i can go to to see pics of diff Peyronies Disease - just want to get an idea of where I would site amongst this.
I can't give you a precise site but when I initially started searching for facts , I know I eventually found photos on medical web sites. Just keep clicking on Webmed and all the other sites. Perhaps some other member will have something for you as well.
They don't sound very mature. If you told them about your condition, do you think they'd display empathy, or turn it into some kind of running joke? I guess only you know that, since they are your friends. I'm paranoid about re-injuring myself at the best of times, so I can understand why this issue plays on your mind. I would suggest that they might grow out of it, but if they're already in their 20's then maybe not!! :)
Would be interesting to know the firmness of the mattress each of us are sleeping on. Im on a VERY firm bed and often wake up with my penis erection being stressed by bending or pressing into the hard bed. Suggest a poll to ask if the bed one is using is soft, med, or firm. I have a sleepnumber bed and have decided to turn it down from 100 to about 60, maybe it will help not doing any more harm.
sleep w your back to the wall and long pillows between your legs so even if you tend to roll over, you wont roll all the way over and damage it- Lenny
Hadn't thought about that, I'll give it a try thanks.
The hinge area seems like a weakened area of the penis, not an area with hard, fibrous scar tissue... but then again - perhaps it is weak because the scar tissue does not allow blood into it. Does anyone know why the hinge effect occurs, if it is common in people with Peyronies Disease? Do you have a hinge effect and has anything helped with it? Better erections seem to improve the hinge, which makes me think it could be something related to the scar not letting the blood in....but i am curious to hear your thoughts on this. It seems at this point that only implant surgery can cure the hinge effect...grafting would possibly just make it worse - if i am understanding correctly.
My hinge is due to a semi circular fibrous tissue. At the begining I had one but no calcification and now I still have it but with calcification. Calcified or not have not change much in my symptoms.
Traction (sorry if I mention it all my post !!) had bring me some improvement. As for grafting alone it may not improve it, but coupled with Ved or traction I think it can bring some benefit. The background of healthy tissue may gain some girth because it become more stretchable. without the ill area.
Thanks Ben. Is the fibrous tissue actually IN the hinge, or does it occur before the hinge and block the blood flow? I think the plaque is closer to my body than the hinge (which is closer to the head)... but i could have plaque throughout (just less palpable).
Quote from: Ben on May 25, 2011, 04:38:49 AM
My hinge is due to a semi circular fibrous tissue. At the begining I had one but no calcification and now I still have it but with calcification. Calcified or not have not change much in my symptoms.
Traction (sorry if I mention it all my post !!) had bring me some improvement. As for grafting alone it may not improve it, but coupled with Ved or traction I think it can bring some benefit. The background of healthy tissue may gain some girth because it become more stretchable. without the ill area.
I have the same feeling on this as I feel the hinge is the weakest point.Stretching and tugging at the tissue.Then using a proper ved to implode and outwardly stretch the damaged tissue.At proper intervals may prove promising in our war against this disease.
Fubar
I am getting woken pretty much on the hour every hour w. erectile pain. Anyone have this happen to them?
Yeah it happened to me for the first 6 months and then the pain started to go slowly and now I have none. I think the stress of this crap causes sleep problems also. Try some ibuprofen just before you go to bed.
Q: Were you sexually active during that period (masturbation, partner)? I stupidly was still having sex for the last little bit and I think that really messed the healing process up.
Yes....I end up not wearing underwear to bed....if I do, the pain from a night erection wakes me up....If I don't have underwear on, I usually am comfortable and can sleep through it.
Hey group,
It has been a while since I posted, but I've been pretty stable for a while, only a minor dent of the left side of the shaft....
I have a question about a condition I noticed right after having having sex where she used her hand to finish. The skin on my penis, near the head and on the right side was somewhat inflamed/swollen. It was definitely noticeable when I was flaccid, not much at all when erect....actually not at all.
I'm sure its just the skin, my tunica areas feel fine; no bumps, etc.
It also looks like the skin is a little stretched on the right side when I'm flaccid.
This happened several hours ago. Of course, I'm more than ever aware of my penis since managing Peyronies Disease, so I thought I'd ask the board if anyone is familiar with this type of inflammation or knows what I'm talking about.
Thanks,
CF
I had something like that also..
I do not think it is related to Peyronies Disease.
Inflamation of the skin can have lots of reasons. from allergy to infection (bacterial or fungus)
Or just a simple irritation.
When i get it, this is what i do:
1. I wash well with an anti-allergic soap.
if its still there the next morning:
2. i use an anti fungicide cream. A soft one.
3. if nothing changed within 48 hours i use an anti-bacterial cream.
Usually it goes away very quickly.
Luc
CF:
First, welcome back on the forum again - long time no hear from you.
OK, what you experienced in the skin irritation is usually caused by not using enough lubrication to provide a very slippery surface. Since you were sexually excited and needed for her to finish up your climax both of you probably overlooked the lubrication effect.
This has happened to most guys at some time or other in their sexual lives. So, let it heal up by abstaining from any sexual activity until you see your skin back to normal.
You can use healing preparations as Luc suggested to help the healing process. But, next time you need to finish up this way, make sure your partner uses more lube, etc.
Old Man
thanks for the input!
the inflammation has gone down significantly over the last 16 or so hours and looking close to normal.
I got to admit, I freaked for a few minutes last night. But, regained my composure and did a self-diagnosis and determined the inflammation was confined to the skin.
Your input helps confirm my determination. There was never any pain.
Also, another admission, I'm just getting back into "the game," sexually speaking, so I'll take this as a sign to be careful.
CF
For several months prior to my noticing the shape difference I was getting woken up by painful erections. Actually, not sure I'd call it painful...just uncomfortable.
The sad thing is....I chalked it up to simply having an erection. ::) I had come off of some significant personal/life issues that essentially created problems for me in that arena. For the longest time....I wouldn't even get the nighttime erections. So I figured my noticing them in the middle of the night was a "good" thing. :D
Oy!
-S
Soxfan, I found that TH1 cytokines and TH2 cytokines up/downplay each others.
When you mentioned "It is also demonstrated that interferon-gamma (IFN-[gamma]), interferonalpha (IFN-[alpha]), and tumor necrosis factor-alpha (TNF-[alpha]) decrease collagen synthesis by fibroblasts", this is probably because some of these belong to TH1 immune system cytokines, therefore it downregulates a number of TH2 cytokines which are profibrotic.
That's my theory so far, I created a thread on IgG4 related disease, which referenced an article about it.