Erectile Dysfunction

[antony]

Hello evrybody,

I don't know if i post in the good section, i'm french so quite complicated for me to understand evrything about the functionnement of the forum. (sorry if my english is not exellent too).Hope you will understand and be able to help me because i have a problem since 6 months that makes me mad.
I was given this adress of forum on another one which was about sexual exhaustion, i was told maybe here you could help me because my problem deals with fibrous tissus in erectile tissue that leads me to total impotence at the age of 25.(even if it doesnt sound like a typical peyronies disease in my case)

I just make a copy of what i sent on the other forum, (sorry if it's a little long)


I try to sum up: i'm 25 and have never had any sexual problem before , evrything was ok .

Evrtyhing started in February 2007, i had a little urinary problem and a sensation of cold in penis , it was diagnosed as a cysticis. Doctor gave me antibiotics for that.

During this time i had 3 intercourses in a night with a girl, with complete and hard erection , as usually, but the erection was with a lack of sensitivity and sensation (probably because of cysticis or antibiotics) .During the 3rd intercourse, the girl was on me and did a wrong lateral move, it hurted me on penis. But we could finish the intercourse. I didn't have any big haematoma or change of color of penis on the moment, just a pain.

I thouht it was nothing but the following days, it was still paintful ,then the loss of sensation and sentivity in penis increased a lot, my glan was totaly cold, and finally 2 weeks after, i lost ALL my erections (morning erections, night erections, reflex erections with girlfriend, etc, etc, i became totally impotent so young).
My penis size also teribly decreased (i had good size before the problem), penis shrunk and changed of form.
I could'nt have no more erection, so no sexual relation, and totally lost my sexual life.
I consulted some specialists who said it would go better, it was not serious, or said crap things (prostatisis, problem of pudendal nerve, etc etc) .
I made a penis echo doppler (for vascularisation of penis) and blood analyses which were normal.

I tried to take viagra or cialis, and saw thanks to the provoked erection ( by viagra or cialis), that my penis was now deformed (curvature on right side), really really smaller, there is a loss of elasticity in erectile tissues, as if corpus cavernosa couldn't grow up as before. The sides of my penis are now very hard and paintful, with no elasticity.

The last doctor i saw thinks i had a shock on tunica albuginea during the intercourse in February and sadly, the scar healing went in bad way, and made a scar tissue on erectile tissue, and that condamns erection!!! According to him, i have a fibrosis of erectile tissues!!And he can't do anything apparently. All that for that. Now i don't trust doctors anymore, and have really dark ideas.

I retried several sexual relations with viagra last month, but nothing is like before now, it's horible , and medicine seems to have no solution.

Nowadays , i have a very probably a fibrosis of erectile tissues of tunica albuginea.

Symptoms are:

-totally impotent
-loss of sensitivity and sensation in penis
-with viagra or cialis, erection isn't 'normal', with no elasticity, penis just becomes hard and paintful. Moreover the size is really smaller than before, and there is a little curvation on right side.
-at flaccid state, there is a torsion at basis of the penis. Moreoever, i can't stretch the penis when i pull on it (as if it was totally fibrosed).
-if i take medicine for erection, as soon as the penis becomes just a little hard, i have like a seminal liquid who goes out from urethra.
-when i touch my penis, the basis can blow up, but the middle is totally thin, like 'retracted'.
-my ejaculation doesn't go out strongly, in 'eject' and big quantity like before, but just like a small liquid which flows out without any force, and so without real orgasm, and i can't control the moment when it will flow (contrary to before).
- to finish, i have a sensation of 'dead penis', my sexual life is totaly destroyed, my man's life too, i am now in depression because of all that.

So it's like a damaged penis which didn't scared well, and that makes erectile tissue don't work.


Ok sorry for this long explanation.

Doctors don't told me i had a peyronie's disease, coz it's not a typical way to happen, my curvature is not so huge, and i was told it was quite rare to become totally impotent in one month because of a peyronies disease. Moreover at flaccid state, its visible that the form of penis changed and that i lost elasticity, but they didn't feel any nodule. (but not sure they are competent).

My questions are (because your forums seem to be really more developed and better that french ones):


1)has anyone here already have a problem like mine?

2)Do you know if there is a way to recover from impotence (vaccuum, hypertermia, etc,) in this precise case? (in fact my goal isnt to have non natural erections to have sexual intercourse, coz i tried that and its horrible now, the penis has become so hard that it hurts, the size has become to small, and i have no more pleasure, but my goal is to know if there is a way to 'destroy' a fibrous scar tissue in tunica albuginea, and to recover natural erections and size, even if its long, coz i not, i dont see the interest to stay like that from the age of 25 to the end of my life)

3)in the USA do you have any real oral treatment for this type of fibrosis tissue ? (fish oil, vitamine E , etc)

4)do you know if any radiologic test can preceisely show a fibrosis inside penis?

Thanks a lot to have taken time to read me, if anybody can help me or advice me, thanks... Hope my englis is clear.

Antony

[ninjagaiden]

Hi guys,

Liam, following your post of June 10th, I was wondering:

I'm not a really sex-driven person and I guess the less you use it, the more prone you are to get ED in the long run (ie, your "use it or lose it" motto) and as I told you before, I can perform sex and watch TV at the same time (well, not really, it's a way of speaking  ) . I had this problem since the start, (very frustrating sex life) and now I see that if I'm really "hard as rock" aroused, I get more pleasure, so maybe I have some ED problem (my nocturnal erections are not always convincing to me too)...

And in the past 2-3 years, I just can't masturbate (in order to "use it") without visual stimulation (xxx movies, you know what I mean ). If I try, I feel nothing and can't get a proper erection. Younger I could do this with only "thoughts", (mmm, the good old days) now, only with movies...

Could this be ED symptoms, or is it just because I have low sensitivity with my toy...
Also I usually can do it "only once", don't feel the urge for a second shot, and the next morning I usually feel as if I've run a marathon...

What do you think?
Maybe I should see a sexologist for the low sexual desire, at the same time as a urologist specialised in Peyronies Disease...

Also, are there natural supplements that I can take (no viagra or cialis for me now, I'm still too stubborn to start using these drugs) which WON'T HAVE SIDE EFFECTS ( I said it this time) on my testosterone level if I stop using them??
I know you're not doctors, but the doctors I asked are just laughing at me and want to prescribe conventional drugs... I want supplements to increase sex drive and erection firmness (can't be hard enough, right?  ). God I'm ashamed to ask such questions...

[Tim468]

Dr. Rose has more than data on erectile dysfunction:

http://faculty.washington.edu/momus/PB/tableofc.htm

[Liam]

Found this while poking around the FDA site regarding Edex injections.  It is a pdf file and hard to copy and paste.  Look at pages 13 and 14 in particular.
"Local Adverse Reactions Reported by >1% of Patients"

http://www.fda.gov/medwatch/safety/2006/Jun_PIs/Edex_PI.pdf


n = 1065
                            n/%
Penile angulation - 72 (7)
Penile fibrosis - 52 (5)
Cavernous body fibrosis - 20 (2)
Peyronie’s disease - 11 (1)

Total  15%

[Liam]

This is an outline of everything to do with ED.  WOW!!!  Too big to post.

http://faculty.washington.edu/momus/PB/impotenc.htm

[Liam]

"The supposition for centuries was that oysters, clams and mussels have been thought to have aphrodisiac properties," said researcher George Fisher, a professor of chemistry from Barry University, in Miami Shores, Fla. "And they were eaten raw for that purpose."

Until recently, there was no scientific basis for that belief, Fisher added. But what he and his colleagues have discovered is that mussels, clams and oysters contain compounds that have been shown to be effective in releasing sexual hormones such as testosterone and estrogen. These compounds are D-aspartic acid and NMDA (N-methyl-D-aspartate).

Source:  http://health.msn.com/centers/mensexualhealth/articlepage.aspx?cp-documentid=100101156

[Tim468]

Kimo, I have had no upset stomach-ache from HGW at all. I have used a fair amount too. I use Nature's Bounty, which has MACA added (which exerts a testosterone like effect, but not at all noticable by me). The HGW content is 500 mg, and the active incredient, icariin is at 10%. Since the biologic equivalency of icariin to viagra is something like 10=15%, I figured that each capsule is something like 5 mg of viagra - so I have tried up to ten capsules at a time.

The effect was not as striking as viagra (which at 100 mg causes a very hard erection, and at 50 mg works a bit less well), but there were few side effects. I was a little stuffy in my nose, had no headache, and tolerated the dose well.

I now take 5 to 7 capsules daily as a supplement most in the evening. I have noted that my NTE's are pretty good and my sexuality is a lot less stressed than before I tried anything (I had a fair amount of anxiety about erectile quality). So overall HGW is cheap and works well for me. I may yet try a higher dose - I go up cautiously when I try higher doses.

Tim

[Kimo]

Tim,,i used to have the bad headaches with viagra and runny nose and all that stuff, but i found after about 2 to 3 yrs all those symptoms stopped..I've been using viagra now for about 9 and a half years and i don't have any side effects at all anymore.....I also tried useing cialis and levitra and i liked those also, but have just stuck with the viagra because i think it works better for me....I think when i switch it will be to levitra....

Tim, with the nerve damage in my intestines from having a parasite a couple of years ago,,do you think the Horny Goat weed might be an irratant?  I would like to give it a try as i don't have any ins anymore to get viagra or levitra and would like to go with something natural anyway's.

Also, i tried the trazadone and it didn't do much for me either but put me in a fog every morning when i woke up,,,,,it did make me sleep well tho....

PainIsGrowth,,,,,,I know exactly what you are talking about,,loosing that feeling i called a tingling in the groin's,,,,,Mine stopped because of low testosterone....I don't know your age, but mine went away when i hit my 50's,,,,my testosterone went from a healthy 800 down to a level of 200 which is very low,,,,,I went on the testosterone patch and it helped real well,,," made me so horny, i couldn't stand my self,,doc had to lower the dose "......The feeling did come back after awhile, not as strong but it's there, so be patient...

Kimo

[Tim468]

I found that 25 mg of trazadone did not do much for me. Viagra has helped with ED, but at the cost of headache. I have done well with cialis for intercourse without the side effects of viagra. I have found that the regular intake of horny goat weed at a fairly high dose (7 capsules at bedtime) helps with sex and NTE both. I like the HGW the best of all.

Tim

[PainIsGrowth]

Here is a symptom I have experienced with peyronie's that I have not heard mentioned much on the forum.  When I achieve an erection with manual stimulation now, it is very wobbly at the base, and much less firm in the crural region.  If I clentch my PC and BC muscles I can keep it at center mast and firm temporarily, but it becomes extremely flexible and wobbly as soon as I let up the clentch.  Is this just a normal part of Erectile dysfunction, or is this plaque buildup in the lower crural region?  Even when I am at my maximal erection, the base part of the penis is completely bendable, and it never used to be like this.  Thrusting would be extremely difficult becuase it feels like there is nothing supporting the base. 
Second, this will probably sound strange to those who still get the feeling, but when I achieve and erection now, I don't get that erectical like sensation that usually proceeds a normal erection.  Its hard to describe in more specific scientific terms, but it used to feel like a tingly electrical rush of blood that no longer occurs during an erection and while the erection is maintained.  Would the reason for this be do to the venous leak I have been diagnosed with, or could it just be the smooth muscles cells are no longer relaxing the way they used to?  If someone who can only achieve an erection with a VED and tension ring is reading this, or other guys who have used a VED just for therapy, maybe its the same feeling achieving an erection in that manner.  It just doesn't feel as good, no other way to describe it.  Finally, if anyone has had the wobbly erection problem, and gotten over it over time, please let me know how you did it.   

[Liam]

Try 25 mg Viagra (not instead of trazadone).  You can cut a 100 mg in fourths.  Cheaper and works for me.  I have organic ED (much improved) from prostate surgery complicated by Peyronies Disease.  They hit at the same time.  OUCH!  I started a nightly 25mg dose before bed and woke up with an erection the first night.  It may also work for the intended purpose even at this dose.

When combining meds, its always best to check with your doctor and pharmacist.

[PainIsGrowth]

I just got a prescription for trazadone to help with NTE's.  I have read through most of the posts on it, and unanimously it appears to be the best drug for healthy nightime erections.  Whats the longest amount of time anyone has been on it?  The priapism really scares me a bit, but I think there is greater risk if I don't get strong erections at night.  I have been trying full dose 20mg cialis, and that probably takes me to a 5 on whatever that erection scale is for NTE's.  Its super frustrating to have ED meds only work so so, and cost 10 bucks a pop.  The thing is, how safe do you think it is to take a pde5 inhibitor at the same time you are taking nightly trazadone, assuming you need one for a relationship?  Also, I read the theories that strong oxygenization through healthy NTE's can balance out the collagen/elastic ratio, and keep the penile tissues healthy.  But, has anyone who went from not getting good erections, then to using trazadone and getting great NTE's, seen any positive change in the appearance or feel of their penis?  Did it get to the point where you didn't need PDE5 inhibitors?  Thanks for the great advice on my past post guys.  I appreciate all of it.

[jon]

  IE: Use it or lose it

or as the kids say these days: find some strange.
And I've said it before, and it's been reinforced a number of times,for the most part, provided you can maintain an erection enough for intercourse, women aren't turned off by it. Honestly, I've been told by one of my female acquaintances that she had no idea until I told her. Just thought I was shaped a little differently. Now there are some out there will act like a bitch if you're not sporting a baseball bat in your trousers, but they're not worth giving a moments concern over.

[Hawk]

Pain (a better abbreviation than PIG  )

I had a nerve sparing prostatectomy but many of my nerves were still lost.  That coupled with Peyronies Disease has left me with pretty significant ED.  For clarification however you made the following quote:

....guys on the forum who have had a prostatectomy and had their sexual nerves damaged

No "sexual" nerves are involved.  They are simply nerves that control arterial dilation when signaled by the brain.  They have no direct impact on sensation, orgasm, or desire.  Having said that, ED and Peyronies Disease can have a significant psychological impact.  Immediately after my prostatectomy when I was certain I would regain full function within 24 months, my desire, sexual activity, sensation, and drive were unaffected by the ED.  As that time period came and went, I developed Peyronies Disease in addition to the persistent ED.  At that point a pessimistic resolution to a permanent condition began to erode my drive and desire.  There is also a clear "use it or lose it" component.  If you surrender to sexual withdrawal an escalating cycle begins.

As an added point, an erection in itself becomes part of a positive cycle with sexual thoughts resulting in an erection, the erection then leading to more vivid sexual thoughts, and the erection even being very sensitive to minor tactile sensations such as normal movement, clothing, etc.

There is nothing wrong with realizing you are not in craving NEED of continual sex.  If you want to maintain desire however, You must work through the psychological aspects of ED and deliberately make the move to start the cycle with physical stimulation.   IE: Use it or lose it

[Old Man]

PainIsGrowth:

You are asking questions that have been around for many decades. I had a non-nerve sparing radical prostatectomy in 1995 since my prostate gland was very large. Cancer tumors covered about 75 percent of the total gland and had a very high overall cancer score. Surgery was the only viable option for me.

I had always had a very high libido all my life until the surgery. Of course, the first thought I had was that my "total sex life" was gone forever. Emotions were running very high and that also contributed to my inability to even get an erection even with the penile injections. So, the VED was added to my regimen and so far it works well for any and all sex.

Anyway, I am relating the above, (your should go back on the Peyronies Disease history thread and read the background for myself and others on this subject), so that you will not feel that you are alone with this problem. My best advice to you is to slow down, calm down your emotions and get a grip of what is happening in your case. Emotions can be very damaging to one's ego and personal life.

Now, with all that said, you should get the best medical help and follow the advice of the professionals who see your first hand. Give them the benefit of the doubt and accept their advice and try to follow it. I am not saying just blindly do that, but make sure you are getting the best pro advice.

Will be glad to discuss any problems further as they arise. Do wish you luck in your endeavor to satisfy your needs physicially.

Regards, Old Man

[PainIsGrowth]

This question will be mainly for those members of the forum with organic ED as a result of peyronie's or old age (old man!).  Let me start by saying, that after having a duplex penile ultrasound, I was diagnosed with having arterial insuffiency and a venous leak as a result of the priapism trauma I experienced.  The doctor rejected peyronie's even though I have new curvature in the flaccid and erect state now.  Mixed ED was the diagnosis, and I only partially respond to PDE5 inhibitors.  The thing is, since the incident, my sex drive has been minimal or nonexistant.  I'll try to be as specific as possible, but I hope I don't offend anyone with the details.  Prior to the injury, when I would fantasize about sex, or see an attractive female, it seemed like my penis somehow would send signals more easily to my brain.  My sex drive was raging, and it felt like I couldn't orgasm enough.  Now, its impossible for me to attain an erection just "thinking" about sex or looking at an attractive female.  Sex also no longer seems like the greatest urge to live for anymore.  Its still pleasurable, but I no longer feel like the young guy who thinks about sex 24 hours a day.  For some reason, I feel like there exists some kind of connection between having a healthy penis and having a strong libido.  This is where I would like people who have been living with real ED to try and retort here.  Specifically, guys on the forum who have had a prostatectomy and had their sexual nerves damaged!!!  I feel like the priapism damaged some of my nerves, because I'm just not responding to sexual inputs normally anymore.  Does having your penile nerves damaged change the way you think about sex, or your sex drives.  If it hasn't affected anyone elses's drive or libido, perhaps I'm just experiencing some sort of depressive slump that is affecting my drive.  But at the same time, I just think when you can't get an erection at will anymore, something that changes your physical body that much has to have an impact on your mental states as well.  Either way, I appreciate everyone's input. 

[George999]

Interesting new research:

http://www.healthday.com/Article.asp?AID=605057

[Hawk]

Pain,

You ask some good questions.  I share some of your ignorance on these issues.  In fact I really question if anyone has in-depth complex answers to the complexity of ED issues.  I do have some thoughts and a few things I think I know.

Venous leakage:  It seems clear to me that venous leakage could be the result of at least a few different situations, each with a somewhat different solution.  I think the first thing we need is a clear, complete definition of venous leakage and its several causes.  Generally it only means that blood flows out of the penis as fast or faster than it flows in.  Since normal erection results from nitric oxide relaxing the arteries and allowing blood to rapidly flow into the penis, and since this enlargement is really what squeezes the veins and further seals them off, how much of your ED is really venous leakage?  How much of it is really reduced arterial inflow? The very fact that stimulation causes the process to work, makes me conclude that you have no venous leakage that is the result of plaque that is preventing veins from being squeezed.  You have no valve issues in the veins (I am not sure valves are ever a factor in venous leakage ED).  Under stimulation, the entire process works. 

This tells me that possibly you have a normal cascading series of events that goes something like:
Stimulation cause a barely adequate flow of blood to start an erection.
The veins get put under enough pressure to reduce outflow and you get more of an erection.
When the physical stimulation stops, the psychological stimulation is not adequate to maintain in flow.
Your erection reduces
Your anxiety level pushes more adrenalin (strong vaso-constricting erection killer) in to your blood.
The inflow reduces more and the veins are now decompressed to speed the outflow as the inflow reduces.

Your psychological distraction from sex (evaluating your erection, thinking of peyronies), and your adrenalin producing anxiety, probably contribute to undermining the process from beginning to end.

Now, ... I could be full of crap, but I for one cannot come up with any other theory that adequately explains your scenario and until I hear one, this is where I cast my vote.

Solutions:
Reduce anxiety thus reducing adrenalin
Assist arterial dilation with a minimal dose of an ED drug (Viagra, Cialis, Levitra, HGW, Arginine) in some combination.
Reduce outflow with a constriction ring.

Remember, just because a constriction ring works does not mean you have scar tissue causing the veins to leak.  It often just means that it gives the slow arterial inflow time to catch up and stay ahead of the process.

Also consider that is can loosely be said that we all have venous leakage every time every erection goes down.  That is not due to scar tissue placing support around the vein that prevents its constriction however.

Traction Devices I have read contrary opinions on whether stretching scar tissue on burn victims actually causes the tissue to stretch via producing more cells or via stretching the existing cells and making them thinner. it seems that this would be easy for experts to investigate and solve.  If it has not been solved then we also do not know which of these penis traction and the VED may do.  That is key to speculating on your traction and new tissue question.

[Liam]

Just speculating, the traction may reshape the plaque, elongating and thinning it.  It seems plausible the ED could improve under these circumstances.  However, it could get worse or not change at all.  I am doubtful about regrowing new tissue, although, I don't discount it altogether.

I have convinced myself to try using mine again.  I have a $50.00 Ebay special.  I may break down and buy a fancy one.  The noose is the part that is the most uncomfortable.

We live in the gray area.

Liam

[PainIsGrowth]

This may seem like a question out of frustration, but here it goes.  I've read as much as I can about the venous leak or (veno-occlusive disorder) and I can't seem to find any indication that people have ever improved from this condition.  I know that ED which is caused from arterial hardening can sometimes be cured if physical fitness is greatly improved, and plaque that is damaging the arteries reverses.  I'm just wondering whats the deal with the venous leak.  It seems like the worst side effect from the peyronie's, that I have experienced.  Somehow the plaque in the penis tissue is interferring with the expansion of the tissue, which doesn't allow the veins to pinch off.  This makes the blood that rushes to the penis leak out faster than it should, so an erection never gets completely hard, and dies quickly without constant stimulation.  I'm wondering if it should be possible for this type of condition to ever improve, albeit slowly over time, if the internal plaque somehow resolves.  I have been contemplating a traction device to improve the slight curvature and major size loss, and read that Dr. Levine is conducting a clinical study on the device that seems promising.  I'm just wondering if a traction device theoretically could improve venous leak erectile dysfunction.  Just hypothesizing, if the device really does induce penile tissue growth from the constant tension, that new tissue should be free from plaque and healthy.  Wouldn't that new healthy tissue maybe increase the ratio of elastic tissue to scar tissue enough to improve ED?  I feel like i'm pulling at strings, but I'm trying to stay positive and look for possible leads. 
I know Levine is recommending the FastSize device, and the European studies used a device made by the SizeGenetics company (not 100% sure).  Anybody have recommendations between these two?

[Liam]

Constriction bands (penis ring) may prolong erection and allow for sexual relations.

No, aspirin and "pentox" are different.  Aspirin is an NAID and pentox is a Xanthine. 

Pentox has had some success in studies done.  There are more studies being conducted.  Use the search on this site.  There has been a TON written on this subject.

Welcome Back.

Liam

[youngPD]

Hello everybody

First of all ,to state my case :I am 33 years old and unfortunately single,and have a pretty bad case of Peyronies Disease ,lots of areas with fibrosis, in a kind of "diffuse pattern". as a result ,I can't keep an erecion without a constant manual stimulation (and shrinkage as well).I have to say my Peyronies Disease started ,not similar to many other cases,with a sound of a "click" ,coming from below my left testicle during sex.from that time ,every time I masturbated I got kind of a strange feeling ,sometimes painfull ,below this testicle and soetimes along the penis.

My questions for you guys :

1.As I have a severe venous leak due to my Peyronies Disease ,does anyone of you ever heard of anything to enable sex in this condition ? I have heard opposite opinions regarding the VED : some said it may be helpful and some claimed it may cause more damage.
2.regarding the pentox - is it similar to the aspirin ? or even stronger ?
Has the Pentox ever brought about serious progress in ED ? if not , so what's the point to use it ? and do you know if it may be dangerous or not ?
Do you have any positive news about emerging new solutions coming up soon ?

3.How do you guys (the single young guys of you...) ,have managed to cope with the sharp change in your abilities and thus your lifestyle such as no more hooking at the bars or talking with the girls in each cafe place like I used to do ?
How did you manage to overcome the fear while trying to date with a new girlfriend with the new sexual condition - meaning the ED? how did it go with the sex ?

Thanks alot for helping

[Liam]

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=17402321&query_hl=2

Isr Med Assoc J. 2007 Mar;9(3):143-6. Related Articles, Links 


Plasmid-based gene transfer for treatment of erectile dysfunction and overactive bladder: results of a phase I trial.

Melman A, Bar-Chama N, McCullough A, Davies K, Christ G.

Department of Urology, Albert Einstein College of Medicine, Bronx, NY 10461, USA. amelman@aecom.yu.edu

BACKGROUND: Ion Channel Innovations has developed a gene transfer product, hMaxi-K, and has begun clinical trials to investigate the effect of increased expression of Maxi-K channels in the smooth muscle of the penis or bladder in patients with erectile dysfunction and those with overactive bladder. The primary function of K channels is to modulate Ca++ influx through Ca-channels (i.e., L-type, voltage-dependent). The amount of Ca++ that enters the cell through these channels is a major determinant of the free intracellular calcium levels inside the smooth muscle cell, which in turn determines the degree of smooth muscle cell contraction. Increased Maxi-K channel activity is associated with smooth muscle cell relaxation, resulting in, for example, penile erection and detrussor muscle relaxation. A phase I clinical trial that used hMaxi-K has been completed and a similar trial to assess safety of the transfer for overactive bladder is about to begin. OBJECTIVES: To assess the safety and tolerability of escalating hMaxi-K doses by clinical evaluations and laboratory tests, and to measure efficacy objectives by means of the International Index of Erectile Function scale. METHODS: In the erectile dysfunction trial 11 patients with moderate to severe erectile dysfunction were given a single-dose corpus cavernosum injection of hMaxi-K, a "naked" DNA plasmid carrying the human cDNA encoding for the gene for the alpha, or pore-forming, subunit of the human smooth muscle Maxi-K channel, hSlo. Three patients each were given 500, 1000, and 5000 pg and two patients were given 7500 microg doses of hMaxi-K and followed for 24 weeks. Patient responses were validated by partner responses. RESULTS: There were no serious adverse events and no dose-related adverse events attributed to gene transfer for any patient at any dose or study visit. No clinically significant changes from baseline were seen in physical evaluations (general and genitourinary), hematology, chemistry and hormone analyses, or in cardiac events evaluated by repeated electrocardiograms. Importantly, no plasmid was detected in the semen of patients at any time after the injections. Patients given the two highest doses of hMaxi-K had apparent sustained improvements in erectile function as indicated by improved IIEF-EF domain scores over the length of the study. One patient given 5000 microg and one given 7500 microg reported EF category improvements that were highly clinically significant and were also maintained through the 24 weeks of study. CONCLUSIONS: Efficacy conclusions cannot be drawn from results of a phase 1 trial with no control group. However, the promising primary safety outcomes of the study and preliminary indications of effectiveness provide evidence that hMaxi-K gene transfer is a viable approach to the treatment of erectile dysfunction and other smooth muscle diseases with targeted access.

Publication Types:
Research Support, Non-U.S. Gov't

PMID: 17402321 [PubMed - in process]

[kenno]

"Bringing Peyronie’s Disease Out of the Dark Ages
Mark M. Newell Ph.D.
This year the American population reached the 300 million mark. The event occurs at a time when American and global medical science is making advances in technology and treatments that were simply unimaginable as little as twenty years ago. Yet, as most patients seeking care enjoy 21st century medicine, there is a significant portion of the American population – perhaps as many as 30,000,000 men, who have a condition that is largely, and erroneously, considered untreatable. The level of care most of these men receive is not much advanced from that given in the Sixteenth Century when the condition was first recorded! ..."

http://www.peyroniesassociation.org/staying_informed/commentary.php

[Liam]

Getting blood back to the hinged area would seem to be a good thing.  In that case the VED would be the tool of choice.  This is just my opinion.  I bet OLd Man would support it.

Liam

[PainIsGrowth]

I was wondering if any members with the hinge or buckling symptoms have ever had any substantial improvements in condition.  My main concern with this hinge problem is drastic ED.  Specifically what medicines were helpful with it?  My hinge developed suddenly and seems to be the main symptom of my case, as I can feel no palpable plaque anywhere?  To the best of anyone's knowledge, is the hinge some sort of plaque or scar tissue that simply wraps all the way around the tunica?  Does it seem likely for this type of scar tissue damage to develop over a few day period.  My hinge could be best described as a making the penis feel floppy, and the whole penis flattens out if I rest my finger on the underside of it near the base.  I am currently trying pentox and arginine, but would appreciate any of thoughts on the progression of the hinge symptoms or possible treatments.     

[Tim468]

I think that this shows that some of the ED associated with Peyronie's Disease can be considered "psychological", and not physiological. This is why giving such things a bit of time, and seeking professional help are worth doing, as well as seeing if one's own thinking is so negative as to "proram" failure into the equation.

Sadly, for many of us, it is also a fact of Peyronies Disease that our erections are not as firm or longlasting anymore.

Tim

[lwmson]

I need to report some good news.  I wrote a few weeks ago with an ED problem that I had not experienced prior to Peyronnies.  I had gotten sick and tired of a lousy sex life and decided to do something about it.  I firmly believed that I had "thought" myself into ED just like Dr. Ruth says you can "worry" yourself into ED.  I was constantly programming my penis to get soft so that I could use indoor plumbing.  Since I wrote, I have programmed myself out of ED.  I have had a dozen hard erections and none of them has gone limp.  I even had to piss in the tub last night (a problem I am glad to have back because I once again have my useful tool back).

[IrishB OCD]

Um we talking over all or just regarding erectile dysfunction?

In erectile dysfunction it's actually made things better/harder lol.  I lost almost an inch from the surgery(Nesbit-Plication), but the same amount of blood is sent to the penis so it's harder than ever (and that's just with "personal stimulation").  The only negative is a lack of morning wood, and random erections.  I think that my subconcious is still afraid of them due to the pain they caused immediately following surgery.  But when I want the erection there's no issue.

But if your talking about like overally result, my opinion on it that's a totally different story.

[jtl4661]

Irish,
Can you tell me the before and after for you surgery? I'm thinking of have this done also I have a 90 degree curve was just wondering on how much it inproved for you. I know evryone is diffrent but would like to know the outcome.
are you happy with the results?
thank for your input.
Jtl4661

[George999]

Welcome Nemo,  I had a similar problem, but a concerted attack with supplements has brought me back to nearly normal.  At one point the very end of my penis beneath the glans was almost spongy in consistency during erections, now it gets nearly as hard as the rest of the penis.  What has worked best for me is 'full spectrum' Vitamin E.  Lots of it.  I am currently taking 2000IU per day.  That level depletes Vitamin K which results in bleeding problems, so I am also supplementing generously with Vitamin K (hard to find, but available).  That level of E also can cause LDL oxidation issues, so I am also supplementing with 6-8g per day of time release Vitamin C.  Finally that level of Vitamin C can cause oxidation issues of its own so I am taking OPCs/Pycnogynol/Resveratrol to deal with that issue.  Pretty complex, but it has worked well for me in gradually knocking out the plaques.  Also, I am also expecting good results from Ginkgo, but be sure to get a brand that guarantees a safe level of gingkolic acid.  Ginkgo also can cause bleeding problems by affecting platelets, so I also take Rutin which strengthens blood vessels and capillaries.  This also takes plenty of persistence, but fortunately, none of these supplements are terribly expensive and I have found them quite cost effective for the results I have been able to achieve.

- George

[Nemo]

Gents, this is my first time posting here - I used to post on the old "law of the jungle" forum. 

I'm 35 and I've had Peyronies Disease since 2002.  Started with pain and a 30 degree bend.  After about a month, the bend released and the pain stopped.  I was using TV, but I don't really think that's what did it - I think it was probably the natural progression of the disease in my case. 

Since that time, the "permanent" damage seems to be at the distal (head) end.  Most of the unit fills completely, but the head end doesn't get as hard as it should anymore.  I'm still functional, thank God, but it does make me a little self consciouse.

I no longer have hard plaques (they disappeared along with the bend), but I can feel a fibrous lump or band deep down in the unit, seemingly right in the middle, between the two corpus. I am sure this is what's impairing blood flow to the head.  I can squeaze blood into the head and it will get hard, but it doesn't stay there for any time.

I've used a VED, and while it did give me back the length I lost from Peyronies Disease (about a half-inch), it hasn't done anything for the lack of firmness in the head.  I know I could use the band/ring, but I just don't want to have to explain why I'm using it, and frankly, I'm not sure my partners even notice this problem as much as I do. 

Just wondering if anyone else has this problem.  I do consider myself lucky, because I know some of you guys are dealing with a much more severe case.  I'm just trying to see who shares my impairement.

Thanks,
Nemo

[scott]

See my ingenious solution on the Light Side topic.  It is the best so far.

[Old Man]

Hey guys:

A personal urinal like used in hospitals works great with bends/curves. Just make sure you adjust the angle to coincide with your angles!! It also avoids "accidents" of spraying or wetting the floor or bath mats!!

Old Man

[Liam]

Always available, unless you have close neighbors.

[IrishB OCD]

Boys you got it all wrong. Get as far away from the toilet as you can, turn so you aim the curve in the right direction, and let it fly.  If you don't hear the water splash...adjust as you go.  Blame any mess on the dog.  It's more exciting that way.

...or if your too afraid..you have a bath tub for a reason ;-)

Irish

[ComeBacKid]

lwmson,

Your goal of keeping some erections while making others go away is nearly impossible.  You can attempt to think of things that would make an erection go away, but it won't happen immediately.  Did you get diagnosed with peyronies?  The peeing was a problem for me to, especially at night when one is groggy and tired, sometimes you may have to angle your body differently depending how bad your curve is, this is what I had to do.  Boy I wish I had a urinal at my house, would make things so much easier at times 

[Liam]

I get a terrible headache from ED meds.  I was able to reduce my dosage to 25 mg.  I can control the headache with OTC analgesics and I do get the benefit to an extent.

I have not tried Cialis in a while (over a year).  I was going to try it this weekend, but a stomach virus got me.  I'm better now.  I just don't want to interfere with work (I mean the headache  ).  The first time I took it was right after prostate surgery.  Nothing happened......Nothing, including side effects.  I am hoping now to get the good benefits without the headache.

BTW, I do get a headache from Levitra that last 24 hours.

Before I found out I had to have prostate surgery, I was considering sinus surgery.  I suspect, after a little research into the matter, sinus trouble and pressure headaches may be related.  I am strongly considering options for my sinus.  I can see it now.  I'll tell the doc, "You have to operate on my nose so I can have sex again!" 

[Hawk]

Iwmson,

Welcome to the forum.  You are among a good group here.  Combined, we have the widest range of patient experience on the internet, and some level headed support.  I speak pretty plainly so don't misread my remarks as trying to be rude.

I am certain that trying to think away an erection in the middle of the night had absolutely NOTHING to do with your erectile dysfunction.  I think you used to get night-time erections (NTE), and now you are a bit older, and maybe have some advance in Peyronies Disease, or an additional medical condition, that is causing erectile dysfunction. 

I am curious about how much Viagra you took (100mg, 50mg, 25mg)

Have you ever tried anything else for ED such as a constriction band, VED, any other ED drugs or supplements.  Have you had a physical lately since ED can be a symptom of several medical disorders that require attention.  Do you have any heart trouble?

[lwmson]

I have had Peyronies for a few years and am now experiencing an undesirable side effect.  When I first got Peyronies, I would wake up in the middle of the night with a piss hard on that was pointing at my belly button.  I would pee in the bathtub because I couldn't hit the toilet.  Gradually, I was able to "think away" the erection so that I could use the toilet.  Somehow that has generalized to all erections so that I am unable to keep an erection even when I want to.  Any advice on how to get the message to my penis to keep some erections and let others go?

[IrishB OCD]

Sweet.  That's not snippy.  That's exactly what I'd hoped to hear.

[Liam]

Irish,

You should become much more aroused with a partner.  I am not trying to be snippy.  I am being honest.  Also, ED drugs may help you gain confidence.

I just got Cialis again after I tried it for the first time right after prostate surgery over a year ago.  I'm anxious to see how it works now that I have some function back.

[IrishB OCD]

Thanks ComeBackid.  The only thing that confuses me a little is that I actually don't have Peyronie's.  I have congenital curvature so there is no plaque.  So it's probably just another problem built into my penis.  Any ideas to help this issue?

[ComeBacKid]

IrishBoy,

I have that same problem... and I never had surgery.  If I stop hand motion on masterbation my erection starts to deplete I've got about a 15 second window and it goes down hill fast and keeps going!  I looked into this a little, it has something to do with the tunica and losing elasticity because its not flexible enough to seal off the blood vessels that carry blood into the penis.  I'm not doctor but clearly the plaque causes the ED and drainage.  All they did with your nesbit is put stitches to even out your penis, this leads me to believe since you are having this ED you still have plaque in there.  One reason I don't like the nesbitt is because your not removing the plaque, what if your plaque worsens later?  I would be careful and make sure you are letting your penis heal properly.

ComeBackid

[IrishB OCD]

Hey I'm not really sure what this means, so I thought that I'd mention it here.

I had the nesbit plication procedure about 2 months ago.  Then about 4 weeks after the procedure the sutures ruptured.  There was some major brusing and pain for a while, then the bruising went away.  Now theres just a few bumps, and some pain if I poke them during erections.

And now I can't seem to hold an erection.  Getting it isn't too difficult, but if I stop the motion during masturbation, even for less than a second, almost immediately the erection starts to go away, and I have to keep going to maintain the erection.  This isn't too big of a deal for masturbation, but it makes taking pictures for the Uroligist extremely difficult.  Additionally, I'm a little worried for sexual experiences with women (if I ever get crazy enough to explain this to a girl)

SO if anyone has any ideas that would be sweet.

[Old Man]

Will:

Yes, I know of several prostate cancer patients that had implants done after all other things failed for them. One was my mother-in-law's last husband. He had one done several years before he passed away. He was in his late 70s when he had it done.  He had exhausted everything else for his ED and after careful consideration, he decided to go ahead with it.

He lived about 6 years after he had it done and was tickled pink with the results. It was the high end implant, I think it was an AMS model 700. It was the three piece one which had the pump in the scrotum, the resevoir in the stomach area and the two "rods" implanted in the corpus areas.

It worked rather well for him and said he would recommend it for anyone with an ED problem. Several others in my prostate cancer support group have had implants done and as far as I know they were well pleased with the outcome. All did, however, state they would only have it done as a last resort.

Hope the above helps. Let me know if I can help further. Give me a PM if you want to discuss anything off line.

Old Man

[Hawk]

Will,

No one on this forum.  I have actually considered it but decided against it.

Old Man probably personally knows one or two prostate cancer patients with it a prosthesis.  I am sure he will post.

[Will]

Hello everyone and thanks for the advice.  Was wondering if anyone here knew of someone who had the penile prothesis and is happy with the results? 

[Liam]

Try pumping and holding, then release and pump again.  You may do this severaltimes.  Each time your erection should get better.  You may also pump while wearing a ring, and then apply a tighter ring.

Check your instructions and warnings.  This is a technique which I have used with some success.

[Old Man]

Will:

You do not mention using the retainer ring(s) or retainer of any kind while using the Soma Correct for erections. If you are having trouble holding the erection long enough for intercourse, try using more than one retainer. The instruction manual should give you a choice of options using the rings/retainers.


Suggest that you try this the next time you use the Soma for an erection: Use all three cylinders as if you were doing a  Peyronies Disease exercise, but do not pump too much pressure when you first start. After a few cycles of using all three cylinders, remove the A cylinder, pump a few cycles using the B and C, remove the B cylinder and then pump up using only the C cylinder. Work very gently and slowly going through several cycles of pumping up, releasing and repeating until you develop a full erection. When you are satisfied that you are erect enough for intercourse, slide the retainers off the C cylinder onto the penis as close to the body as possible.

You will need to experiment with the retainers until you find the oneones that will hold the erection as long as you need it to for sex, etc. However, remember that you should only leave the retaianer(s) on for no more that 30 minutes at a time.

Will be glad to help you in any way with the VED. Just let me know how I can help and I will be there for you

Regards, Old Man