ED - Erectile Dysfunction (Started August 2005)

[jackp]

antony
3cm = 1.18 inches.
That is approximately what I have lost. Been married 39 years to a wonderful lady and she supports me. One night just before I became 100% impotent she asked, Jack have you lost some size? I told her yes and she never has asked again.
When I made the decision for the implant she said "Jack you do not have to do this for me, I did not marry you for your penis." I assured her that the decision for the implant was for us not just me. Have an appointment December 13 for a second opinion  on implant and she wants to go with me. See  my story of failed surgery under the surgery category.
Believe me I have tried all the other options before implant. At 65 I can not wait for 10+ years for the FDA to approve something else for ED.
Jackp

[jackp]

antony
Something else I wanted to say.
I have had Peronies and ED for almost 15 years. I understand you not wanting to jump into an implant. It took me 14 years to make that decision. I do not want you to feel that I was putting pressure on you, just telling my story.
I only started to consider an implant 3 years ago I was lying on the exam table in the Uro's office waiting for a Doppler, Dr came in and put in an injection of PGE1 and said for me to work on my penis like buskit dough for a few minutes. He came back in and proceeded with the Doppler. While lying there for 20 minutes trying to get the PGE1 to work was the first time I considered an implant. (PGE1 did not work).
Good Luck on your journey. Gods Speed, I wish you well.
JackP

[antony]

Jack :

I understand you take this decision now. But as i mention, and Tim mentions, in my case: if i do that now at 26, and imagine in some times there are good results with gene therapy (waiting from Attala re-engeniring tissues), what will i do with my implant??? It will be definitive. As you mention it, despite you were married long time (it counts a lot to have your wife understanding , and speaking with her, as for me i'm not married, i was just going from a girl to another, and my gf is not my wife or future wife), it took you 14 years to accept this idea.... So put yourself at my place (you can understand coz you suffered from that), until january 07 , i had a perfect sexual life, perfect penis, etc, suddenly an intercourse with bad move of the girl, and some times later all my symptoms, lots of wrong diagnoses, and now 9 months later, thinking about a definitive surgery like a penile prostesis (that is something very hard to accept mentally), you can understand why i can't take it (in my case) as a solution.
In the same way i understand that your wife -you are married to since 39years- can understand and accept that you have to press on testicles to induce an artificial erection (if you take a balloon implant, coz i took informations about it), and, as she told you, she has not married with you for your penis (but imagine if your problem had hapened after few time you were with her.... Hopefully you were already married for long years when it hapened) ; in the same way you can understand, it's hell in my situation : having such a problem with my wife after long years could be acceptable, but having it before meeting my future wife , and start new relation with such an handicap, i can't. One again, there is the notion of  DEFINITIVE in that surgery. Something definitive at 80 and at 20 doesn't take the same signification.

In that way, i understand what Olde Man says and meens, to wait more time as possible, and try all possibilities before that. Even if in the same way, i will not meet a new girl and arrive with my VED to induce erection. (can be worth to try it for 'penile reeducation, as a daily training, but not for an intercourse)

And testing combinations like Tim reports, viagra, l arginine, pentox, etc, is worth to try.

Jack, can i ask you how you have maintained your sexual llife during these years? Cialis, viagra , etc? And did you get an MRI that showed the plaque of fibrosis, or any exam? And what was the result of your doppler?

To finish (and for Nemo too, concerning your post about implant), i would add something: you know that in france, anyway, even if i would ask by myself to put an implant (what i would not do); they would refuse coz i'm too young. I spoke to a guy who has the same problem as me (same age),he was becoming mad, finaly accepted with great difficulties the idea of an implant to stop taking viagra, injections, etc, and the 2 surgeons he saw REFUSED to take the responsability coz he was young, and if in some years there are other solutions, it will be definitive surgery and after the guy could regret. But as he told me, will he still be on earth in several years? Coz it's devasting, he had to go to psychatrich hospital coz he was becoming mad, and i dont want to do the same.
So, Nemo, see that it's normal for me to be so mistrustful towards implant, when EVEN the specialists don't accept to put it for the same reasons i mentionned. It means: next 60years of life without any natural erection. Also, there are 15% of failure during surgery, we must not forget it. But the question is : what solutions?

The last thing is that they don't accept too when you still have a reaction to PGE1 injection.

Tim :  do you know if viagra+ l arginine + pentox on daily basis is safe for health?
For your example of 2 guys (sorry sometimes i don't precisely understand in english): is that meaning that they had priapism (not treated), which created fibrosis (consequences of not treated priapism), so they became impotent etc, tried lots of things with no results, and that combination viagra-l arginine-pentox healed the fibrosis?

Or does it mean that they often made priapism or had too long time erections and that this treatment permitted them to have no more priapism (sorry for my misunderstanding).

Do lots of you passed MRI that make the plaque in evidence of images?? Coz my MRI doesn't show the fibrosis according to the doctor, we can see twisting/torsion of penis at basis but not any plaque or nodule .

I wish good luck to all

Antony

[Tim468]

Your first impression of the article was correct. The men HAD priapism, and it was treated in a classic way, but did not respond (in priapism it is vital to get rid of the erection, and they were unable to get rid of it for those men for over 48 hours). The CONSEQUENCE of failure to get rid of the erection in priapism quickly is that most men will go on to develop complete fibrosis of the penis structures (including erectile tissue).

For that reason, they put the men on the three drug protocol for over a year, and they did not develop fibrosis - although it is my memory that they had started to do so, and it was reversed by the therapy.

In rats and rabbits, this combination has been shown to REVERSE fibrosis in those animal models of Peyronie's disease.

Therefore many of us are pushing for this treatment when all else has failed us. I am not on it myself, for I am doing OK on what I am doing (Horny Goat Weed, Cialis alternating along with supplements).

Finally, for a while I was also mixing up your story, Antony, with that of another poster named "tunica" who claims he has lost three inches in a week. It doesn't change what I said though.

Tim

[PainIsGrowth]

Hey Antony,
I completely 100% feel your frustration, depression, and disgust at this situation.  I myself, and in a similar predicament, and have severe E.D., shrinkage, and 90% loss of sensitivity.  I am sure we do not have Peyronie's disease, but some other variation of trauma induced penile fibrosis.  I have been researching penile sensitivity and libido, and how found some interesting bits of information.

"The presence of genital sensation was positively correlated with the ability to feel a build up of sexual tension in the body during sexual stimulation and in the feeling that mental arousal translates to the genitals as physical sensation."

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17016492&ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

In this case, the loss of genital sensitivity came from a spinal cord injury.  In my case, and in Atony's case, it came from some type of trauma that severely damaged the penile nerves.  In this state, its not that we are depressed, or anxious, and thats why our libidos are low.  Literally, our penis's can't send information to our brains, to become arroused in the first place.  Its a nightmare.  Now only does genital sensitivity control arrousal and pleasure at orgasm, it controls erectile functionality.  I literally feel like a broken person now.  Its hard to describe; it feels like trying to describe brain damage in a way.  I know I "want" to feel horny and I should feel horny, but my damaged body isn't allowing it to happen.  I know looking at the nude female form is erotic, but I get no physical response from it.  
I know every man has to face these problems alone.  When I first faced this E.D., and shrinkage, I thought it was the end of the world.  At this point, I would be satisfied having E.D. and shrinkage as long as I could feel sexual pleasure and normal sensitivity in my genitals.  What it has taught me, is it can always be better and worse.  I am now looking into somehow regenerating my peripheral penile nerves enough to transmit enough stimulation to casscade an orgasm.  The supplements i'm looking into our ALC, PLC, ALA, and continuing the pentoxifylline.  I hope within some time in the future we will all have a complete recovery from this hell.  

[antony]

TO TIM :

ok thanks for precision. I just don't understand one thing: so these men had priapism not treated in 48 hours, and the known consequences are fibrosis and impotence (like Pains is Growth had). But if i understand, in your case, these men did not develop the symptoms, coz they were put under the 3 drugs, not in order to HEAL a fibrosis, but in order NOT TO DEVELOP a fibrosis, is that it Tim?
So sadly, it's not my case (or Pain is Growth one). Coz in our cases, the hell is already done, so now we have to reverse the fibrosis (and probably micro fibrosis but at lots of areas of penis, not only a big plaque at ONE area). Is that it? The thing was interesting in your memory, that these guys had reversed fibrosis, but if it was 'only' to prevent from fibrosis, it's different. Coz another point is we are young, and taking long time cialis, viagra, pentox, vit E, l arginine, anti depressors, anxiolotics, herbs, etc, etc, for NOTHING is not worth to try, it's not good for body. After, if there is a hope to heal, then it's worth to try i agree. So, don't know. But to be honest, when i see my penis now (and i still can't realise how in only few months, after a shock not so terrible, it can have CHANGED SO MUCH, in anatomy, structure , size, form, lenght....), i don't see how any treatment could make me re have a normal penis and normal life. And i swear that before that, i had NEVER had only a mini problem one day concerning sex or genital area, never any problem at all. So, hard to accept that ALL PENIS AND ERECTILE CAPACITY DIED IN SO FEW TIME AFTER MAKING LOVE...Especially being not married or whatever. But the psychological consequences is another issue, what i am interested in is to find ALL THE POSSIBILITIES TO HEAL FISICALLY, or at least give amelioration. Coz if there is NOTHING to do (and i'd like a F^@$!ng specialist to dare telling the truth and being honest and competent), i don't see interest for me to lose my time, my money and my life in this hell situation.

To PainIsGrowth:

Hi man, yes i know that we live about the same thing, and it hapened at same moment... I conclude like you that we don't have peyronie, but a variation, and worse one, coz making us totally impotent and total loss of sensations and big shrinkage. But there is a role of fibrosis in our casesn even if its not a typical peyronie plaque.

What is a 'spinal cord'? I know since the begining that the fact our libidos are low IS NOT DUE TO mental or stress,or even testosterone or whatever. I know, i feel, it's TOTALLY ORGANIC. The hatred i have, is why with F^@$!ng money lost in exams and crap specialists, no one helped us.
I wanted to ask you, you had told me about some venous leak for you, how was it diagnosed? (what exam?) Did you passed the MRI now?

I totaly understand what you explain and feel when you say 'i know i want to feel horny and should feel horny but my damaged body isn't allowing it to happen'. Like you, i have no more reaction by looking at nude beauty, or every thing else, even my girlfriend, who is really attractive makes me no reaction,(and she tries... and even with cialis it becomes very hard to have intercourse now) and i exactly say the same to her : 'i know i should have a reaction!!! but i just can't coz body is broken' and its horrible when i know in my mind that I had very fast and strong erections less than one year ago, i had a great sexual life, and i know it's because something is fisically broken that it's dead. And it's easy to see that with eyes, by looking penis, so when doctors say 'its ok there is nothing', it makes me mad.

I continue too pentox but with no real hope. For regenerating nerves, i had read about complements of Dr Lin , but i think it's not serious stuff, only crap to make money on the despair of people, but there were some interesting testimonies on his site (but are these testimonies real?) ,don't know if anybody tried these products??

I don't know too how to go out from this hell, when people who had to help us didn't. Sometimes i just want to finish all that now. Sometimes i want to fight again. But last consultation with a 'specialist' (what a joke) definitely killed me. I feel dead being alive...

[Tim468]

Antony,

Re-read my post carefully. When young men come here in pain, I have noticed that they often do not pay close attention to what is said to them. I wrote:

"In rats and rabbits, this combination has been shown to REVERSE fibrosis in those animal models of Peyronie's disease."

This could not be more clear. I understand that you are concerned, but you typed a ton of stuff without seeming to have read what I wrote. From a personal standpoint this is discouraging, because it makes it seem as if what I write is irrelevant.

Keep working on getting better. Wallowing in pain shall not help you at all. If you see a term that you do not understand it, either google it or look it up - you can learn a lot about what is happening to you by reading and paying attention - for now it seems that you emotional pain is preventing you from making much progress.

Tim

[antony]

Tim,

Sorry you make mistake, you answered and i read your answers carefully (or i would not ask help here if i would not read well answers).
Of course there are some terms i don't understand precisely or sometimes -rarely- some meanings in english, but most of time i understand.

You 1st told me that combination of l-arginine, viagra and pentox had reversed fibrosis in human cases, but, if i understand well, in fact that these treatments were given to them in order NOT TO DEVELOP fibrosis after priapism; and not for HEALING fibrosis (if i've well understood the precision you gave after).

Then , 'in rats and rabbits, this combination has been shown to reverse fibrosis in those animals models of peyronie disease'.... yes, but we are not rabbits and rats. If it was the case, we could even repaired damages in our penis NOW with re engeneering because Atalla managed to do that on rabbits, and it works, so.... It's -sadly- not because it works on rabbits that it works on humans.  I supose that we don't treat a human penis ,that is bigger in erection than the whole rabbit, as we treat a rabbit's or a rat's one. Moreover, i don't have a peyronie disease, at least classical one, or maybe yes , but directlly the end of it, when you have become impotent coz of too much diffuse fibrosis, i directly started by that.

I'm concerned of course, because as a conclusion from medical world, and of all what i tried (viagra, cialis, plants, continuing intercourses, anti depressor, VED, pentox -for only one month at the moment for this last one-, vit E, etc), there is nothing that helped, healed, or whatever, and at this point, i'm not far from realizing that my sexual life (and all consequences) is finished now. (maybe waiting years from re engeniring). So, yes i'm concerned, as all the other persons who have problem like this.

So one again, thank you for your answers that help me, and knowledge about what can help concernig fibrosis (and probably venous leak as a consequence -the trauma on tunica albugina forbids the tunica to make pressure on venous and blok the blood- for that reason that viagra or cialis don't work really). But please don't think wrong things, or have too quick conclusions: i can be concerned and attentive to what you say, and my emotional pain is of course terrible (all my life , from fisical appearance to profesional activities, including of course relations with girls and other persons, self-confidence, or activities have changed), but it's not that which prevents me from making progress, because i try, do, listen, read, ask, go to doctors, and take the medicines, and even try to continue relation with GF... It's just the useless of treatments in such a bad case that prevents me from making much progress, and that leads to this emotional pain, not in the other sense...

Antony

[nemo]

Gents, I've been reading some studies online that showed that in diabetics and men following radical prostate surgery, the combination of propionyl l carnitine and acetyl l carnitine (2g of each per day) plus viagra improved the efficacy of the viagra.  

I currently take 3g of l arginine every day (Vasoflow), and when I'm going to be taking Viagra for sex, I take 2g of arginine one half hour before the Viagra to, in theory, create more nitric oxide for the Viagra to use ... but I think I'm going to try the 2 carnitines as a supplement to the viagra since these studies specifically show that to be effective (at least in diabetics and prostate surgery guys).  Plus, frankly, Vasoflow is nasty - the taste and smell almost make me gag - I've never seen a pill I literally hate to touch!  If I could switch to the carnitines instead of the arginine, I think I'd do it gladly.

My question is, is anyone already trying this (carnitines plus viagra)?  I hate the thought of downing 14 pills every day (carnitines plus arginine), but I'm not opposed to it if it will help ...

Nemo

[pal-31]

Nemo,

I am not an expert, but I think the carntine is more of an anti fibrotic kind of an agent. George has been posting some good info on AGE and saying the the ALC (Acytel-L-Carinitine) is one such agent.

Arginine as you noted is good for blood flow and erections. I dont know if you can substitute one for the other.

I do agree with you on the VasoFlow. I hate the stuff myself and have been cutting back on it to where I hardly take it now. I usually dont have any problems taking pills but this one is just something else. I would be interested to find a substitute.

[Hitman]

perhaps u could try bulk AAKG or citrulline malate.

[Tim468]

VasoFlow does smell strongly when one unscrews the bottle. But if you think that's bad, try bulk L-Arginine! I was making my own capsules for a while, but moved to VasoFlow because it has added Norvaline, which blocks the effects of "Arginase". Arginase promotes the formation of collagen and proline, and it competes (as an enzyme) with NO Synthase, which as the name suggests, aids in synthesis (creation) of NO.

But that powdered arginine was nasty! BTW, so is carnitine powder!

Tim

[Hawk]

Vasoflow did not bother me at all until several here started drawing attention to the odor and I begin to focus on it more.  Thanks a lot guys    

I really think the sealed container odor is the only real issue.  If you laid a couple of capsules out prior to taking them I think it would greatly reduce the issue if not eliminate it altogether.

I think ALC is a great supplement for general health and a benefit for Peyronies Disease.  I am unaware of any immediate effect it has on erections or working synergisticly with Viagra however and I took it long before I tried L-Arginine.  The ALC may have some effect on erections with long-term regular use that I am unaware of.  It did eliminate the very minimal pain I had in the early stages and may have helped erections (difficult to know) but the first time I took L-Arginine I noticed a fuller hang within 30 minutes.  I got nothing of that nature with ALC.

PS: I had a prostatectomy  

[nemo]

Hawk, here's a study I found that claims ALC and PLC taken together increase the efficacy of viagra in prostate surgery patients.  You might be interested in trying this, as I recall you saying viagra was only marginally effective for you.

Nemo

http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6VJW-4HHNH61-17&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=489386e31a2c990da6843bd84d1d44c2

[Liam]

Good Stuff Nemo!

[Hawk]

Thanks Nemo.

I began an area for clinical studies of ED in our "Resource Library" and included your link.

[George999]

Note that PLC is also beneficial for those with diabetes related ED:

CONCLUSION: PLC plus sildenafil was more effective in reducing SI and endothelial dysfunction markers in patients with type 2 diabetes and ED.

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=17478034&dopt=AbstractPlus

CONCLUSIONS: Salvage therapy with PLC plus sildenafil was more effective than sildenafil in the treatment of ED in patients with diabetes refractory to sildenafil monotherapy.

http://www.ncbi.nlm.nih.gov/pubmed/15383186?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlus

Yet another really good read:

The combination of 2 grams each of PLC and acetyl-L-carnitine daily was more effective than testosterone at improving nocturnal penile tumescence and the International Index of Erectile Function score, an important measure of erectile and sexual function. PLC and acetyl-L-carnitine thus appear to be safe, effective agents for managing male sexual dysfunction.42

http://lefcms.lef.org/magazine/mag2005/dec2005_supp_atherosclerosis_02.htm

[Hawk]

I had a very modest, but measurable, improvement in my own "ED" (in quotes because I have not had complete ED, but "flagging erection quality" - softer than it used to be) using these supplements.

I did not see any change in my Peyronies. The other issue I have with these studies is that they seem to come from only Italy, and have not been verified in a multi-center, double blinded, placebo controlled study. Given the lack of efficacy that others are finding with Verapamil iontophoresis, for example, it makes one wonder about the veracity of Italian data in general.

Tim

Tim,
I placed this quote here only so it could be discussed if antone cared to discuss it since the Resource Library is not an open discussion area.

Hawk

[George999]

Just a side note regarding ALC and PLC.  Both ALC and PLC have anti-glycation properties.  But each perform that function in different environments.  ALC performs as an anti-glycant in water soluble environments while PLC performs as an anti-glycant in fat soluble environments.  The extra-cellular matrix of the vascular system is fat soluble, thus this is where PLC is effective.  On the other hand, most other tissues are composed of water soluble extra-cellular matrix wherein ALC is the effective supplement.  So PLC targets vascular issues while ALC targets non-vascular issues.  This would explain why one or the other might be more helpful or why one or the other might not be helpful at all in certain situations.  - George

[nemo]

I'm visiting a Urologist at the Mayo clinic in Scottsdale next week as I'm trying to figure out why Viagra works great for me sometimes, and not others (has nothing to do with food, I always take on empty stomach).  I'm also currently seeing an Endocrinologist because I'm scoring lower than I should on Testosterone tests (235 once and 434 a second time).  

My question is this though ... I woul like to know if I have some degree of venous leakage, but my understanding is the only way they do this is to inject the penis to induce erection.  However, as a Peyronie's survivor, I'm REALLY not interested in the potential for needle induced scarring.

Would you guys agree that I shouldn't let anyone give me any injections?

Thanks,
Nemo

[Old Man]

Nemo:

Based on my experience with injections, I would run like a deer away from anyone even pointing a needle at me penis. I took the Verapamil injections for a while and each one gave me more nodules and plaque.

I am sure that many others here have been through the same thing. As for venous leakage, you can possibly do a check of that yourself. If you can get at least a partial erection, hold it as long as you can to determine if it "leaks" down quickly. If you can't get an erection without "help" from pills, but can get it partially up but won't hold up, you may have a problem with venous leakage. At least, that is the scenario that presented itself for me.

Others, I am sure, will give their experiences too. Good luck on trying to find out for sure. Maybe a visit to your uro who is knowledgeable with venour leakage can confirm it, etc.

Old Man

[ocelot556]

Is there a way that you can tell if the scarring has reached the corpora? I think I might be psyching myself out here - damn the psychological component of ED - but it seems like a few months ago I had no problems with erections, and now they are softer. Now, since considering the scarring might be a factor, I can't seem to get hard at all in the past few days. I'm 23 and looking at a life without a penis, and am getting horribly depressed. I know that's likely to be it, but if there's a way I can tell without going to a uro (have been to 3, none who have advocated ultrasound or anything other than "time") I'd like to hear it.

[nemo]

Thanks for weighing in Old Man.  That's my thought too - I think needles are too risky.

As to venous leakage, I can get erect without pills - I can still masturbate, etc, it just requires manual stimulation to get myself up.  However, I don't get erections that I can just leave unatended for long periods of time ... I need to give it a little manual stimulation to keep it hard, but I guess I figured that was due to 2 things: first, I'm 36, not 18 anymore; and second, Peyronie's left me with a little distal softness.  The head doesn't get hard as it used to anymore, so I assumed that this makes my erection more "high maintenance" ... in other words, without stimulating the head, it does indeed start to wane within several seconds to a minute I guess - it doesn't wane rapidly, but it does wane.  A little manual stimulation and I can stay up indefinately though.  Now, if I'm getting close to orgasm, I do get harder to the point that I can leave it unattended for longer.  

Often, my body position affects it ... If I'm sitting up, my erections get harder, or if I'm on top, they get harder, or standing up, etc.  While I realize this could indicate leakage, I just attributed it to softer erections with age and gravity helping me out.  

I hate to think this is venous leakage, because I realize that's pretty much irreversible.  With Viagra, my erections do "lock in" meaning I can go for a faily long time with little or no manual stimulation and I'll stay erect.  I just can't figure out why Viagra seems to be showing spotty results with me of late.

As to my testosterone, my initial test in Oct showed Total T of 235, which is definitely way too low for a 36yr old and could explain no nocturnals, etc.  However a test last week showed Total T at 434, which has not got me totally confused.  That isn't great T, but it's not clearly too low like 235 was.

I'm all confused and very down about all this.  I'm in a relationship with a girl who loves me and says she's stand by me regardless, yet I know how much she loves sex, and I am sick thinking about a future where I'm always woncering from day to day, "will it work right tonight?"  I realize things could be a lot worse, but that's where I am.

[jackp]

Nemo
Sounds like venous leakage to me.
When I had my Doppler they gave me a shot with a small amount of PGE1 in the penis. First they do a Doppler without the shot and then one after the shot. No the shot did not hurt just a little sting.
In most men low T do not effect erections just libido (my experience). It has taken me years and 3 Dr.'s to get the shots right. The one that finally got it right for me was my Primary Care Dr. (PCP). Now I get 300 mg of T every 10 days. Makes me feel great but does nothing for erections.
With a history of Peronies and Venous Leakage take it from me you do not want to go on the shots. (The only shot you want is for the Doppler). I have tried V, C and L. now now little to no responce.
I did tri-mix shots for a couple of year. Then had to have heart stints and Dr. said no more because of the blood thinners.
Last October when I was having implant surgery the surgeon penetrated the urethra and had to stop the implant. Why, fibrosis in the corpora's. Dr. explained that the fibrosis was from the shots and a history of pereonies but mainly the shots.
Now I am going to different Dr's about trying the implant again.
Get your Uro or PCP to do a custom fit VED and keep that penis healthy. I wish I had that advise years ago.
"old man" has the VED down to an art. Listen to him.
Good Luck wish you well.
Jackp

[nemo]

Well, even if I do have venous leakage, I don't really see the point of getting an injection, seeing as there's nothing they can really do about it.  My real quest is to figure out why Viagra has eratic efficacy with me.

Nemo

[pal-31]

I think that most men with Peyronies Disease have a degree of venous leakage. That is why Peyronies Disease is frequently accompanied by ED. The ED is usually caused by the Venous leakage which caused by the plaque/fibroses.

I agree, telling a Peyronies Disease patient that he has Venous leakage means nothing. Venous leakage or not most ED is treated the same way. Your options are still 1,2,3,or 4 that is pills, injections, vacuum, or implant.

Nemo, please do a search on injection or ultrasound. I have asked the same question a few months ago. Many people responded with their views.

Nemo have your Dr. tried increasing the dosage of the V ? or may be switching you to Levitra which may be stronger than V ?

Good Luck,
Pal

[nemo]

Hi Pal-31.  About 5 months ago I started using Viagra and 25mg would work like an atomic bomb - lasting into the next day even.  Occasionally, if I'd eaten a meal or something, I'd take 50mg with the same effect.  Then about 3 months ago, I had a couple incidences in a row where I wasn't getting hard during kissing/hugging, etc, which had always been the case before.  On these occasions, it required direct oral for a few minutes to get me hard, but then the V was clearly working as the erections were firmer and lasted after climax.  This freaked me out though that the V seemed to faulter a bit.

I started taking 1.5 grams of L-Arginine half an hour before the Viagra and whamo, there it was again - fully erect before clothes came off.  But after a couple weeks of this, it got back to where it took oral to get hard.  Upped dosage of Arginine to 2 grams before V and there it was again.  Now, a month later, back to needing oral to get hard.  Any more, I usually take 50mg of Viagra just to err on the side of plenty.  I don't really know if the Arginine is a factor, but I'm scared to go back to the V alone at this point.

The whole thing just freaks me out, as the V was really a confidence booster for me, as I didn't have to worry about getting enough stimulation to stay hard.  But now, I'm no longer confident that the V will work every time.  So far, it's never failed me, but the variability in the way it works scares me.  I just can't believe my body would build tolerance to V in a matter of 3 months though.  That's what got me checking Testosterone, which is a whole other issue, of course.

I will ask for samples of Levitra, thanks.  

[Hawk]

Ocelot and others,

I disagree that all men with Peyronies Disease have venous leakage although many do..  Some have NO ED issues at all. Ocelot, I also sense you are concluding that ED has something to do with scar tissue forming in the corpus Cavernosum (CC).  I think there is little basis to draw that conclusion.  If there is, I have sure not seen it.

My understanding is that Peyronies Disease related ED when present is most likely a result of venous leakage (other than psychological issues).  I think the leakage has everything to do with the positioning of the plaque more than the degree of plaque.  I can imagine a few ways that an area of plaque could prevent a major vein from being squeezed shut during an erection.  If the blood flow in does not exceed the blood flow out, no erection results.  This incidentally is usually caused by plaque on the tunica not the CC.

I think any good penis ring (one that can be removed without stress or injury) tight around the base of the penis would answer the question.  Since the Veins are near the surface and the tunica, the ring/band pinches them closed but not the deeper arteries.  Vacurect VED makes some that I think are ideal for use with their VED.  I have used they without the VED.  Their system is different than most since they are more like a flat rubber washer that goes on the penis before erection, rather than a rubber band that goes on after the erection.  They also have a wider contact poiont with the skin.  They become tight as the erection grows.  Actis makes a slip noose that can be tightened or loosened. Such a ring/band will possibly work better if there is not plaque near the very base of the penis where the band would go.

[nemo]

Guys, if you've read any of my posts in recent months, you may recall my finding that Viagra isn't working for me like it was when I started using it about 5 months ago.  I'm 36, 170lbs, good blood pressure, cholestoral, etc.  At first, Viagra was really killer, giving me nice firm erections that required only minimal stimulation to stay hard indefinately, and refractory period was mere minutes.  I was in heaven, because the distal softness Peyronie's left me with was rendered moot by the V - my erections were quick to engage and lasted as long as I wanted.  

However, about two or three months in, the Viagra seemed to be faltering.  No longer would I get hard during kissing, etc., it was taking direct oral to get hard, but once I did, I could tell the V was "in there" as the erection was nice and solid and remained longer after ejaculation (a Viagra calling card.)  I then started taking 1.5g of L-Arginine before the Viagra and bam, there it was - the pre-sex erections, and the whole nine yard.  Over a couple weeks this began to wane and I was back to needing oral to get hard.  So, I then started 2g of Arginine before the V and bam, there it was again, same as before.  After about a month, this has now waned back to needing oral or hand stimulation.  This was all freaking me out as I really feel the V is not working on me like it was just a few short months ago and it seemed to happen all at once.  I got my Testosterone checked and it was low at 235.  Got it rechecked and it was 434, so I'm confused there but will follow up as I know from reading that in men with Low T, Viagra is not as effective, but once T is adjusted, V then works better.

All that is to set up the scary events of last night.  Here's what you need to know.  At lunch I had a peanut butter and jelly sandwich and at dinner I had two small granola bars - that's all the food I had yesterday.  At about 4:00 I went to the gym to workout for the first time in many months - it wore my ass out and I ran a mile on the treadmill, which I never run, so this was very tiring.  I left pooped.  Went out to a late movie with my girl and took my usual 2g Arginine at 10:30 and 50mg Viagra at 11:00. We didn't get home until about 1:30AM.  Hopped in bed and I got hard with a little hand action.  Erection stayed there for me during all of foreplay and was ready when I needed it.  I was already quite tired from the workout that day, the long day, little sleep the night before and the very minimal food intake but once I was having sex, I noticed it just didn't feel as good as it should (almost a lack of feeling) and sure enough, I began to lose my Viagra erection.  We stopped, a little handwork and it was back up, tried again, and after a few minutes, lost it again.  This happened three times - I was finally able to complete the act on the third time.  

OK, this was scary enough, as I never lose a Viagra erection.  But then about 3 in the morning, I awake sweating, feeling nautious and dizzy.  I get up to go to the bathroom and pass out.  My girl took me back to the bed and I immediately felt better, like nothing had happened.  I surmised that the lack of food, exercise and combination of Arginine and V had caused my blood pressure to drop, which in turn dropped me.  I can kind of understand this, because I've taken Arginine and V several times now with no lightheadedness or ill effect.  I think my body was running on empty and couldn't handle the chemicals I put in it.

But could my physical condition that night account for the erection losses?  Has anyone ever lost an erection on Viagra?  This scared me worse than anything, since I'm already panicked about the V losing efficacy in me.  I'm seeing a Uro at the Mayo Clinic on Wed hoping he can help me, but my other uro was less than helpful on why Viagra was giving me mixed results.  I'm hoping you guys might have some personal experience you can share.  

Thanks guys,
Nemo

[Tim468]

Nemo, I think that you are right about why you collapsed. You should run it by your doc too.

The erection sounds like it was simply not meant to be. Every word of your post made me uptight - Good God! I felt the tension and I wasn't even there! It seems that you are focusing on erectile success so much that you are really a set up for failure on a psychological basis.

I suggest that you sit down with your girlfriend and talk to her )not that you  have not already done this. Tell her how scared that you are. How hard this is on you, How much pressure that you feel as the concern mounts that you might develop ED. All that is apparent to me reading your post - I would make it clear to her as well.

Then, the two of you could develop a way for you to not have so much panic about your sexuality. You can agree that you will have some sex with "no intercourse allowed" - restricted to only kissing and touching. Making it a rule that you cannot have sex will make your concern about your hardness irrelevant, and allow you to actually focus on how you feel about your partner (remember her?). It can allow you to develop a sensate focus that is not soley based on your penis erection quality, but on all of you. Then, your concerns about your sexuality failing will lessen, and I predict that you will feel better.

Tim

[Old Man]

Nemo:

I agree with Dr. Tim's post about you being over anxious about your sexuality. In adddition, I would like to suggest that you get a good heart check up as well. You probably know that Viagra is not RXd for a heart patient who might have low blood pressure or are taking nitrates, etc.

I would strongly urge you to see at least your family physician for a good thorough going over exam to include the heart. He/she should get you an appointment with a cardiologist to get all aspects of your heart checked. I know that once my cardiologist RXd nitrates for my angina, the Viagra contraindictions clearly state to refrain from taking it if one is on nitrates, etc. BTW, Viagra did not work for me anyway.

Anyway, I like Dr. Tim , think that you are placing too much emphasis on getting and keeping an erection. From your post, you had driven yourself well beyond the normal limits of one's day activities. Step back, take a look at what you said in your post, then decided if it sounds like a normal day for one of your age. You might find that you agree with me as well as the good Dr.

Old Man

[nemo]

Tim and Old Man, you guys are absolutely right, and I appreciate your compassion and thoughtfulness.  In fact, I have become totally preoccupied with my erectile performance since I've been in this relationship.  You'll be glad to know that she and I have a very open and loving relationship and we talk openly about Peyronie's, ED, Viagra and everything else.  I knew I couldn't hide anything from her for long, so we talk about it quite openly and she could not be more supportive.  I am blessed to have her.  

I guess basically I was looking for some reassurance, which you've given me.  I did push my body too hard yesterday and paid a price for it.  But honestly guys, I do feel that the Viagra is not working in me with the same efficacy as it did at first.   I am still trying to get to the bottom of whether I warrant testosterone replacement (as I don't get nocturnal, spontaneous or morning erections any more), but am also hoping to determine if there might be some other reason my body seemed to tolerate Viagra awfully quickly.  (I've never heard of it stopping working on someone that fast).

Again, I appreciate you guys' words of counsel.  The black dog of depression has gripped me over this, as I fear a future where I can't have the kind of sex she and I are used to.  But honestly, I do feel that the lack of nocturnals, etc., is my body telling me something is wrong ... I just didn't care to find out until my secret weapon (the viagra) started faultering.  When that started happening, yes, I became obsessed.  I feel like I'm fighting for my sexual health if not my sanity.

Thanks again,
Nemo

[Tim468]

A woman who leaves you over erectile failure is worth losing. But a woman who stays with a crazy man isn't worth having either. All you can do is work on YOU. You indeed may be having failing erectile health. So what are you going to do about that? From the VED to the implants, there are options to be able to have a sex life with a loving partner. But for now, you need to focus on being more emotionally stable, and on choosing a methodical and smart way of figuring out what is going wrong.

You can do both - you can have worsening ED and/or Peyronie's Disease and be working on it, AND be sane and happy. The sane and happy part is not DEPENDENT on having a perfectly healthy penis - it is dependent on your heart and soul. Sometimes that takes some hard work - like talking to a therapist, and taking medications, and using weird contraptions like a traction device. But we can always work on our health for the better without going crazy in the process.

Tim

[RJones]

Laurence A. Levine, MD, FACS, Professor of Urology at Rush University, Chicago, IL will be answering call-in questions this Wed., 1/23/08, between 12noon and 1pm Eastern Time at 888-463-6748 (international callers can call 011-847-470-0937).

It's a live broadcast on the Dave Baum Show at TalkZone.com and Dr. Levine can answer all kinds of questions about men's sexual health including:
1. ED (erectile dysfunction),
2. low testosterone and its association with diabetes, hypertension, metabolic syndrome
3. Peyronie's Disease (bent penis)

The broadcast will also be archived at TalkZone.com if you would like to listen later.

[Hawk]

Welcome to the forum Rjones.  I see from your email address you are associated with "Talkzone".  We appreciate you taking the time to register and announce this on the PDS forum.

 

[nemo]

Hawk, are you still taking L-Arginine with Viagra?  If so, how much do you take and do you take it with the V or before (and if so how long before)?

When I noticed the V was not hitting me as hard as before (after only a few months), I started taking 1.5g of Arginine, and it kicked me right back to superior performance.  Then after a couple weeks or so, it was petering out.  I increased to 2g, 30 minutes before the V, and again, superior performance.  Month later, back to where it was.  

Just wondering what your protocol is.

Nemo  

[Hawk]

Nemo,

I take 1500 mg arginine.  I take one 500 mg tab every 30 min and pop a 20mg Levitra (maximum strength) with the last arginine.

it gets me right to the point of just good enough of an erection to have fairly normal sex.  I am at least fortunate that whatever degree of erection I get, it lasts as long as I want it to.  While I have a problem with degree of erection, i never have a problem with the erection lasting.  On occasion I have used the VED or just the band without the VED, which gives me a harder erection.

I have never felt faint from the combo and I have ideal blood pressure 110/60 - 125/70

My brother-in-law recently tried a Viagra as an enhancement and after sex he went to the bathroom.  They were in a motel.  His wife wondered why he was gone so long and he told her he passed out and came to on the floor.  They just laugh about it although I would be cautious.  

[nemo]

So Hawk, is your theory that you're building up the 1500mg in your system slowly, rather than swallowing 3 pills (arginine) all at once?

Nemo

[Hawk]

Nemo,

I wish I had a theory.  While I know how long the Levitra tends to take, I am never sure of how long the arginine takes or how long it lasts so I stagger the dose so I am sure I have some arginine in my system.  Since I take levitra on an empty stomach, staggering the arginine seems to be easier on my system.  My schedule of taking this is little more than my quirky way of taking it.  I would not read too much into it.

PS: I corrected a serious typo in my previous post.

[nemo]

That's an interesting way to do it.  I started taking 1.5g an hour before the viagra, and that worked great for a little while, then not as much.  So then I started taking 2g half an hour before and that worked great for about a month.  Now, tonight, I'm going to try just the 50mg Viagra alone and see what happens.  That passing out incident the other night didn't bother me so much, but I feel like I need to reevaluate just how effective the Viagra is alone once again to know where I am with it.  The arginine was clouding the issue.

I know I have a few theories I keep talking about (like my testosterone possibly being low, or venous leakage/arterial issues), but the damned performance anxiety is the real bitch because you can never assess what role that is playing.  But I swear, sometimes, it just seems that the head of my penis is not as sensitive.  Lately, to even masturbate (no Viagra) I have to work the penis pretty vigorously until I'm almost ready to orgasm, then it starts becoming erect and then I can build it up into a nice erection.  I wonder if this is Peyronie's related, as I have pretty evident distal flacidity thanks to Peyronie's.  But who knows for sure - ED is a frickin' hornet's nest.

[Tim468]

Nemo,

I hope that you take seriously my advice to back away from sex for a bit to reduce the anxiety. this is not a case of getting back in the saddle (so to speak) - rather, it is a time for sober and calm reflection on what you have and what you do not have. The more that you work your penis to get it hard, to assess how much sensitivity it has, to see how long it stays hard etc, the more problems I predict you are going to have.

Really try some "sensate focusing". Look it up for more details. You need to give your poor dick a break, IMHO.

Tim

[Kimo]

Nemo,,,,,Tim is right man,,you really need to listen to what he is saying...I went through the exact same thing you are going through....I ended up going to a sex physcologist, and he told me to just relax as i was worrying about it too much and making things worse...The more you try to perform ,,,key word here is [ TRY ],,,the worse it gets....I've been there..

I learned to relax and after some time went by things started to come back,,,my sensitivity in my penis and i was able to ejaculate again and overall feelings and performance all came back....SO,,,,like Tim says,,give your dick a rest and when you go to have sex,,just enjoy the moment and take it as it comes....It really does work......

kimo

[nemo]

Thanks guys, I know you are right.  I will be giving it a break for a few days.  

The good news is tonight, I used a Viagra with no L-Arginine at all.  To my surprise, it worked like it did in the good old days, up before clothes were shed and ready when I needed it all night.  This proves to me an important point - I had decided that Viagra was no longer as effective in me, or losing effect at least.  This proved to me tonight that while it may sometimes work better than others, it has not lost effectiveness.  This, in and of itself, is a big relief and will hopefully ease my mind a bit.  

I'm still pursuing with a doc at the Mayo to determine why I don't get nocturnal/morning erections (and ultimately, if I have venous leakage) but at least now I know my chemical companion has not abandoned me.  

Your advice is much appreciated, and I will take heed.

[NxNW]

In response to Nemo's previous message...
---snip---
"But I swear, sometimes, it just seems that the head of my penis is not as sensitive.  Lately, to even masturbate (no Viagra) I have to work the penis pretty vigorously until I'm almost ready to orgasm, then it starts becoming erect and then I can build it up into a nice erection. "
------

This is something I have been having problems with as well.  Even with 50mg Viagra, my erection stops at the hourglass leaving the remainder and the head soft and only semi erect.  I find I have to use two fingers to pull the shaft skin down at the base of my penis during intercourse in order to feel any sensation at the head.  Otherwise I have difficulty  achieving orgasm.

I tried a tension ring that I purchased at an adult store and it helps to keep things stretched out.  But I really don't know how those things should be put on, what kind to buy, etc.  Some web sites say to loop the ring around the scrotum along with the penis; others say just around the penis.  I still have a lot to learn.

[nemo]

That's what's known as "distal flacidity," meaning the penis downstream of the Peyronie's damage doesn't get good blood flow.  I think this is pretty common, at least my doc says he hears this frequently in Peyronies Disease guys.  

One thing to consider though - I've found that Viagra and the others (Levitra and Cialis) tend to make it a little more difficult for me to reach orgasm (which I don't really mind). I originally started using them because they give me a solid enough erection that doesn't require vigorous action to stay up, as it would without the drugs.  But there are times (especially if I've already orgasmed once) that vaginal sex just won't bring me to orgasm a second time.  I've heard other guys says these drugs make it harder for them to orgasm, so that may be some of the issue with you.  

If you are able to have sex without Viagra once, you might try and see if you don't orgasm quicker without it.  

Good luck,
Nemo

[Hawk]

NxNW,

In addition to functional use, penis rings also represent some quasi sado-masochistic ornamentation in some circles.  There is never a functional reason to put a band or ring behind the testicles ( between the body and testicles).

There is an adjustable Actis loop that receives mixed reviews.  It works like a slip knot and can be gently put on or taken off the penis.  I would be cautious with anything that causes discomfort or trauma because you my well make the Peyronies Disease worse.

I would consider getting the rings (flat washers) that go with the vacurect VED if you can buy them separately.  I have that unit and I think the rings are of value even without the VED. There is a good picture of these rings along with the unit at http://www.fitzz.com/Bonro-Medical-Vacurect-OTC-Penis-Pump-P952C0.aspx  You may have to contact vacurect to see if you can buy them seperately.

[nemo]

I know what you're saying, Hawk.  I think I may have some degree of venous leakage, but I've always been a little scared of the penis rings for fear of the tension putting stress on the tunica that might trigger the Peyronie's devil into action.  

I know Old Man and other use the VED and rings for sex, but I'm still a little aprehensive about those tight buggers.  Right now, I think I can feel a very slight indention near the base that fills out when I'm fully erect.  But it sits right about where a ring would sit, so there's no way I want to put stress on it.  I'm sure a lot of guys use them successfully though.  

Nemo

[Tim468]

I do not use the tension ring (thankfully I do not need it) but the Osborne system seems smart. It has a cutout to go over the urethra to allow outflow of semen, thus without cinching off everything.

Tim

[Hawk]

Tim,

I agree with your point on the urethral cut-out making sense but I have other concerns with the design of most VED rings including the Osborne.

I have never used the Osborne unit and have only seen videos of its use but these are my concerns with the Osborne design as I understand:  The Osborne ring (like most VED rings) is stretched under tension and literally released under tension onto the penis. It actually takes a cone to wedge the ring open and it is then slid off the large end on the cone or VED, snapping tight on the penis.

With the vacurect design, the penis is inserted through the hole in the ring prior to a full erection with absolutely no tension.  The penis then slowly expands to fit snuggly into the ring.  The Vacurect ring also has a flange so the point of contact with the penis is wider than narrow band-type rings that usually come with VEDs..  This would also seem to disperses the pressure against the penis tissue.

It is the sudden transfer of energy to penis tissue by an expanded ring that bothers me.  This "snap" of energy onto the penis seems be the major problem with most VED ring designs.

A less important consideration is convenience.  The Vacurect design does not require a single piece of equipment to put it on, just a penis and the ring.

[nemo]

Yes, "snapping" that ring off onto the penis seems scary to me, and it is very tight.  Perhaps Old Man could weigh in with his experience in this area.  Just seems like potential "trauma" to me.

Nemo