ED - Erectile Dysfunction (Started August 2005)

[ComeBacKid]

Anyone who has taken this, did you notice your penis was more pumped and fuller when flaccid throughout the day?  Seems like it could give one spontaneous erections.

ComeBackid

[Hawk]

I have taken Cialis and specifically noticed it does NOT make my penis fuller or cause spontaneous erections.  Every ED drug indicated that it will work only with stimulated erections (psychological or physical stimulation.

[Mr BLBC]

Zig,

I'm not taking it, the 50mg I think is double what people are taking that are not looking for a anti depressant. I think they are taking 25mg. I have read that you will feel dozy for the first couple of hours in the morning, but it should go away. Also your body will adjust to it after several weeks.

Mixing and matching a whole bunch of supplements? I think we can go over board with them. It is hard to tell also what is working and what isn't. There have been too many positive reports with alc, arginine and over all good diet to discount these in my opinion.

I thought about taking the tazadone also, thought it might be good for depression and erections. I have night time ones, so I decided to go the route of exercise, it always puts me in a good mood, endorphins.

I had to back off the dmso, it burnt my skin after six applications. So I'm taking a step to the left and adjusting.

So far for me what seems to work is.....a good arginine, alc, glutamine sports mix, a well thought out and consistent diet, epsom salt baths, and lots of sleep....this is where the trazodone might help some people, the stress of this or when life gets in the way....you need sleep to heal....my self, if I go for a three mile run, do some weight training ect.....I get the same results, the epsom salt baths also induce sleep for me....

This weekend instead of soaking my self in thacker, I made a tee time, I going to play 18 and get some fresh air....a good dinner...movie and a warm bath...maybe a cold beer afterwars at the 19th hole....

Every time I think of a new supplement, the first thing I do is look for foods with this in it, and it to my shopping list for groceries, natural is better....

The first several months is hard with peyronies, you become anxious, question your mascunity and become depress and stressed out...then start looking for the magic pill.....

I have only had this now for four months, I can have sex if I choose, I'm a lucky one.

I take now cq10/vit e(it comes in the same pill) msm, fish oil(omega three) along with the arginine, alc sport mix......serrapeptase(trying this).......The only reason I'm doing this enzyme is the lady at the store said she seen results in four weeks on her c section scars, I'm very doubtful, it doesn't dissolve the same plaque, but she could really care less if I bought it or not, the live testimony and the cost was 17 dollars for a month I added it to my list.

I was told and believe you have to limited the number of supplements, try to get it down to under six, some say four, I count my sport mix as one, this is because they have been put together to work hand in hand, and fish oil(omega three), I don't count, but do believe this is one of the most important supplement to take, I don't see it working against anything. Hard drugs, pentox, trazadone ect...put  together by your doctor for a specific condition, well then if this is your choice I would talk to him about your other supplements....

One has to look at there age also and general eating habits and health condition. I take a prostate vitamin, I'm over 50, no prostate problems, but prevention is the best medicine, it is really a condense tomato paste...I eat a steam beet every night, great for your colon health....

ALC l believe is more needed for someone over 40.....

I know for myself, you can read on post on this forum or somewhere on the net, like I took capro and my peyronies went away, and we all want to be saved also...I'm just as guilty, I had a bad experience with burning and taste on the dmso years ago, but kept reading post on it, pretty soon I had it on, now I have a sun burnt looking penis, and back to the drawing board.....I'm talking as you can all see to myself again on here:)....but I'm sticking now to the diet I have put together, this I can tell is helping me with all aspects of my life, and is the life style one should lead, peyronies free or not, plenty of fresh air and exercise, humor, pray, and some supplements, once again the only one I'm taking that I wouldn't take anyway is serrapeptase, the ALC I found because of peyronies, and I would take this anyway.....

I checked into the ved, my insurance won't cover it....the new model should be out in several weeks, I talked to the rep at soma, and gave him my urologist name to get the prescriptson I need....since most of my program is leaning towards a physical approach to this, the VED seems to make sense to me at this point in the game.....Take care and God Bless...

Rico

Rico,
I like the same kind of lifesytle too, healthy food, exercise, sleep....etc

I'm taking the supplements that most here are taking along with vitamins, I also take 25mg of trazadone, I  get the "fuller" size during the day.....

I went through 15 ultrasounds and 4/5 iono treatments, my doc did'nt know what settings to use so I treated myself and did the treatments at 4 amps, it took 4 minutes...

As you know my loving wife is creating a VED for me, hoping to share with everyone when she finishes it.....

An avenue we have thought about is strong manual massage followed by icing......any thoughts

Mr.BLBC

[Rico]

Mr BlBC,

I know some talk about jeling(sp), which is a form of massage, the Old Man posted he could provide information on it. I thought about it, but I ordered the VED and will do the 26 protocol that is the shorter version of duration of holding the vacuum 5-10 seconds for 10 times. Dr. Levine on his web site disagrees with this, he prefers long periods for five minutes a couple of times a day......he did say that there are no studies on the VED which one can stand by as of yet, but he condemns the spivey method?
My only reasoning on short periods comes from studying under a Russian trainer who started a new regimen for stretching, he use to train the KGB special forces and now trains martial artist all over the world, Pavlica is his name, I went to his seminar and then did some training with him and became friends. His method work, and especially on scar torn areas, short burst of low intensity stretch, held release and held release. I notice great improvement, and after a short period and had for years did the hold and strain approach.....the hold and strain approach actually tears the muscle or tissue, wear the other method stretches and it come to learn memory...warm up is important also, or condition, like going from the small to medium cylinders.....so this is my reason to go with this, plus the OLD MAN agrees and he is my New Sensi and I do believe the old wise one, I will swing my sword again is my battle cry!!

The massage IMHO is or would be harder to control the symmetrical shaping of your penis, you might massage the scar to thin in one area or not enough in another, and get a lope sided dick, or more lop sided....I think that the vacuum gives one more control and quality and consistency in the pressure over a even surface, I think of the same as with traction, especially if you are also going for girth, and the warm blood is a big asset, once again this is why I think ved is better than traction or massage...IMHO:).....remember I only have one dick, so anything I do is a one study:).... I did hear of this two pecker billy goat in Kansas, maybe we can get him:)!!!

I just went to the APDA site and read the VED comment on the holding the long period five minutes, and Levine's comment on that the company that is producing the three cylinder ved HAS(not in his opinion, but has) the wrong protocol.....I find this to be talking out of his side of his mouth, how can he say that everything is hear-say because there are not enough studies and then say that?? Then he says he is going to use the three cylinder......I feel anyone who follows the long pump method is asking for problems....I will say that, because I care about people and I wouldn't want anyone to injure there peyronies more....I'm sorry, because I don't have a study to back it, but I have been around the block a couple of times and I believe it....

When It comes to the VED, well Angus and the Old Man are ahead of the curve In my opinion.....

I didn't want to get on a tangen here Mr. BLBC, or go the long way around the barn to your question, but I would go with the three tube and follow the 26 week protocol, and like Angus and the Old Man says, it is like cooking ribs, slow and long........

RICE....rest...Ice....compression....rest.....is best used in the early stages of a injury....if you think you over use the unit and it is re injury and inflammation sets in, then yes, I would ice it, or if you want to add circulation, then I would go from hot to cold, use a shower massager, one minute hot, one minute cold for 14 minutes total time....as the Old Man stated when you start, take your time, maybe only pump for a minute, get use to it....the first few times, weeks is so important to condition your scar tissue and surrounding area to the treatment, most athletes can't control their desire to get back in the game, walk before you run I think would be the right approach with the ved and mine is order, I might add I got the information from SOMAcorrect fts(this stands for fit to size), the new improvements are nothing really, mostly for ED, more rings to put on your unit, more sizes ect...maybe the seal is better?? most of the kit I won't use, so I don't think the new one is anybetter than the old model three cylinder for peyronies....I already ordered it and have to wait for it to come the first week of sept....my gut is you will be seeing other ved suppliers coming out with a three cylinder, and maybe a doctor backing it also, with his own protocol.....I know if Joseph Pilates where asked which one he would choose he would pick the short holding period of the stretch, he was so far ahead of his time, just like the Old Man, and you know why, because he actually use it hisself...isn't that a brilliant way to figure something out:)!.....

Rico

[ComeBacKid]

Well I submitted a bunch of questions to the world peyronies expert, finally they answered one of my questions, and one we have debated on this forum.

When I take Viagra I notice that it gives me a full erection and improves my "weak" erection from my Peyronie's disease.  I only took it a couple of times and then heard not to take Viagra and stopped.  It seems to help my erection and makes sex possible for me.  Can Viagra make the disease worse or do damage?  

Answer:  This is an excellent question as you point out some of the misconceptions for the use of Viagra or the other PDE5 inhibitors (i.e. Cialis and Levitra).  All three of the companies who make these drugs have in their package insert a cautionary note regarding using these drugs in men with ED and Peyronie's disease.  This is because the companies did not study ED in men with Peyronie's disease and therefore they cannot make any claims to the FDA resulting in the cautionary note.  On the other hand, a published study examining the effects of Viagra in men with ED and Peyronies Disease demonstrated that it did improve erectile function in 71% of the men receiving the Viagra.  In addition, none of them had worsening of their deformity or new onset of pain.  Furthermore, there is very recent research evidence that Viagra, as well as the others, can increase the amount of circulating nitric oxide (NO) which appears in the research setting to have an anti-fibrotic effect.  
           The key point to remember is that if you use Viagra or the other agents to enhance your erections in the presence of Peyronie's disease it is possible that you could reinjure the penis during sex.  It is therefore wise to be careful about one's sexual activity so as to reduce the likelihood recurrent trauma and reactivation of the Peyronie's process.  So far this has not been a problem for my patients.

So taking viagra according to Dr. Levine is actually a good thing, man I wish someone would of just came clean with an answer like this awhile ago.

ComeBackid

[Liam]

ComeBackid,

Good work in getting a doc to clarify.

Answer:  This is an excellent question as you point out some of the misconceptions for the use of Viagra or the other PDE5 inhibitors (i.e. Cialis and Levitra).  All three of the companies who make these drugs have in their package insert a cautionary note regarding using these drugs in men with ED and Peyronie's disease.  This is because the companies did not study ED in men with Peyronie's disease and therefore they cannot make any claims to the FDA resulting in the cautionary note.  On the other hand, a published study examining the effects of Viagra in men with ED and Peyronies Disease demonstrated that it did improve erectile function in 71% of the men receiving the Viagra.  In addition, none of them had worsening of their deformity or new onset of pain.  Furthermore, there is very recent research evidence that Viagra, as well as the others, can increase the amount of circulating nitric oxide (NO) which appears in the research setting to have an anti-fibrotic effect.

  IOW, We got something right.  ::::feeling pride in our forum::::  

The key point to remember is that if you use Viagra or the other agents to enhance your erections in the presence of Peyronie's disease it is possible that you could reinjure the penis during sex.

So, use ED drugs to improve your erection.  It's perfectly safe.  But, any sexual relations you have (due to your new improved erection) may make it worse.  CYA at its very best.

Watch those CYA words:  may, could, is Possible, when used correctly, etc...
The list goes on.

Liam

[ComeBacKid]

"Dr. Levine on his web site disagrees with this, he prefers long periods for five minutes a couple of times a day......he did say that there are no studies on the VED which one can stand by as of yet, but he condemns the spivey method?"

Dr. Levines statment:

The vacuum therapy has been suggested for several years to be a potential treatment for Peyronie's disease to stretch the scar tissue and thereby result in straightening.  Unfortunately, there are only anecdotal, unpublished reports on this approach.  Currently there is a study in Chicago comparing the results of verapamil alone to verapamil plus vacuum therapy, using the three piece vacuum system.  The results of this study are not yet available, but in my opinion, it does seem to make sense to combine medical therapy with the hope that the drug may affect fibroblast behavior, which is responsible for the scarring, as well as applying mechanical forces to stretch the tissue and to encourage further remodeling and straightening of the penis.  The key is that the device needs to be applied daily for no longer than 30 minutes per treatment, but these treatments can be done 2-3 times per day if the time is available to do so.  So far there have been very few reports in the medical literature that a vacuum device would cause Peyronie's disease, but again it is unlikely that the device so much causes it as it does result in an erection which can then be injured activating Peyronie's disease in the susceptible individual.  Currently I am using combination therapy of verapamil injection with external vacuum therapy using the three cylinder VED device.

Rico, I don't think Dr Levine is condemning the current method, he simply states there is no medical literature with studies on this subject that are available at this time, this is something we all know. Most doctors like to do research and produce studies, and don't seem to like to support protocols or treatments without them. Doctors love DATA (just ask Tim, he drinks DATA every morning instead of coffee )  I think its a good thing that Dr. Levine believes in the theory of vacuum therapy and is pursuing research on it. He just basically says the device CAN be used 2 or 3 times a day. I don't see anywhere that Dr. Levine has said you should hold an erection for 5 minutes? He does use the magic number 30 minutes, he must be getting this from all the traditional warnings of not leaving the constriction ring on more than 30 minutes.  I believe it was Angus who told me he did 2 workouts per day, I don't think doing more than 10 pumps per day will hurt, but then again I'm not the doctor.  To me it would seem like holding longer would be better.  When I used to run cross country we would hold our stretches for 20 seconds to get a better stretch, I was so flexible I could palm the ground standing straight up, most people just stretch for about 10 seconds. However it took two or three months to gain that stretching ability.  I think there is no exact protocol for the VED yet, other than what Augusta Medical Systems has produced, it is quite possible that Dr. Levine may develop a different protocol that works just as well, I think the important thing in this arena is just to do some stretching of that tissue, don't let it rest idle and contract even more.  

ComeBackid

[Rico]

ComeBackid,

That was his last post, and maybe he changed his mind now, or calm it down, try reading all his post on that site, it wasn't long ago that he said that you shouldn't follow the method of short periods, vs the longer, which is find, this is his opinion, I thought it was strange that a Doctor without a study or placebo study that everyone hangs there hat on, can say the longer stretching vs as he says the up and down approach is better, go back and read the whole forum and tell me if I'm wrong....

Rico....slow and steady....the st recthing is my opinion and it is a new and NOW a favor way of stretching by experience people with sport injuries....

I'm not against Doctors, and now they are saying that it is going to be a combination of medical and mechanical approach to peyronies, so they are trying to get 50%..... talk to any chiropractor out there, the medical community treats them like the red headed step child, like I said, there guts turn on the thought of them having DR. on there business card, they don't respect them, so be it....I don't care, but if I catch one talking out of the side of there mouth, I will speak out on them, this is my choice as a American who came to call when his country called.......

As I see it, the only way now that they can get there name on the method is change up the protocol, and maybe they believe in there technique, I DON"T, and most coaches or people in tune with st recthing today wouldn't either, or people decades ago, Like Joseph Pilates, his method which is use by almost anyone who knows what is going on, including the New York City Ballet, NFL football League and every other major sport franchise follows the short bursts and repeated method....Please read the whole post and then post your comment...

God Bless....

Rico

[Rico]

ComeBackid,

Once again, it is up to you...if you want to hold it longer, go for it....the program I read said 5-10 seconds for 10 times once a day, this is 50 seconds to 100 seconds total per day, this is the plan that makes sense to me from a person who has spent years of working with repairing scar tissue, not as a doctor, but patient.....what work for me and what didn't....I'm going with what is believe to be the best method today.....remember there are egos and money to be made out there, this isn't a good will gesture on there part....I don't care what you choose to do, hold it for five minutes if this what you feel you need to do, once again also, you peyronies is not the same as mind, I have to say what I feel is right for someone like myself that has had peyronies now for four months and has a slight curve and hour glass and plaque on the septum....which again, Levine said is the most difficult, which I disagree, because there is more fiber in this area and it is more center, which I feel give ones a better chance to mold the plaque....if someone beats them to the punch, the only way they can capitalize on it is to tweak it.....maybe he was in track twenty years ago....that is how they use to stretched, there are people out there who haven't keep up with the sports community...

Rico

[Rico]

ComeBackid,

Remember that they have been sticking people with needles and drugs for years, this is why now he is saying that the cure is 50% medical and 50% mechanical, how does he know this, or is the a classic CYA, Mick, Old Man, Angus went with 100% Mechanical, or is this a way to not say, OH the Chiropractors figure it out AGAIN!!  

I'm not saying that softening the plaque can't help, I thought of needling the plaque, which again would be more of a mechanical approach, but I have to go back to people like Mich, who had the common sense to say, I have to find out if this works, and thought if he used anything else he wouldn't know, so he did it on a stand alone basis and got results, Thank You Mick and Old Man and Angus...you are the pioneers.... Hero's to us all!!!

Rico.........  if you took the electrical current away from any verapamil treatment...you guess what you would have....

[ComeBacKid]

Rico,

I'm kind of confused as to what you are saying?  I did not see a post from Dr. Levine saying that holding the VED for longer time periods is the way to go, if he did say that its just his opinion.  I'm saying I don't think it can hurt.  You say Mick, Angus, and Old Man had the common sense to try this, I agree, I think VED therapy is the way to go thats why I'm trying it as well...  Dont forget the many others who have tried it as well... steve, soxfan, ziggy, tim etc...

I kind of lost you in your last three posts man, personally I think Dr. Levine is just trying a new protocol for stretching in doing it for longer period, this may work better, or it may not, we don't know really, Dr. Levine is going to the bat for us and I appreciate his efforts, hes doing more than most doctors who tell us to go stare at our dicks and take vitamin E.  I don't think Dr. Levine is condemning the current protocol by Augusta Medical Systems, if he is please show me the post.  I think you kind of misinterupted what I was posting about.  I hope there will be more studies on the VED therapy andwe can learn even more about it.

ComeBackid

[Rico]

ComeBackid,

I have nothing against Levine, I said if you read back a few post that he says that the up and down method is not correct, but once again has no study to back it, it is confusing that all the "doctors" want studies, but they can say what they want....read back about 8 months....the up and down is short periods and repeat, he thinks longer period like 5 minutes for several times a day....this is his opinion and maybe he thinks it is right, so be it....like I said, you have to go with your heart on this one....I will choose the later, the Spievy, which by the way I thank you for showing me...and I thank the Old Man also, his might be a little different, but I like the Old Man's way of thinking, take it slow, be careful, less is better....I myself wouldn't put it on for five minutes the first time.....that is me, I will go more like 5 seconds for several times to I get a feel for it....another thing Levine said in one of his old posts is that the look in the tube is not real because of the blood giving a false imaging of what is happenings, it is filling the tissue and not st recthing the tunica, this to be doesn't make sense, I feel that you are stretching it from the inside out, which is why I feel is better than massage or traction, the scar runs deep and is less suitable to further injury from this approach IMHO, because you are not pulling on the outside of the injured area as much.....

Rico

[Old Man]

Hey guys:

Take a good hard look at the Spivey method and the Soma Correct Protocol. I think that you will find that they are one and the same. The vacuum therapy site (Spivey) just leaves out a lot to be desired about the details.

Regards, Old Man

[Rico]

Hopeful,

I will address the ED first and then circle back on the unit issue you asked about in the last post...

First of all ED can be different for all of us, it can be a mental problem and or health issues.... peyronies can lead to ED issues...

I have been taking ginseng, Prince of Peace, I bought it at GNC, I take two serving in the morning with ginkgo, I have noticed good wood in the morning...

I believe in over all health, many studies tying your heart health to ED....this is the main pump you have to keep in check to get the blood to your unit....diet also, if you are over weight this can effect your performance, smoking, drinking are contributors to ED...

I would suggest first...exercise, including VED, start with walking....I should say before you do anything, go to your doctor, get blood pressure check ect..... so exercise, diet, and supplements, omega three, cq10, opc's, ginseng, ginkgo.... and lots of juice and water...

If you really focus on your heart and your problem is a physical one, I think you will be on your way to better erections soon, one can turn his body around in six weeks on the proper program....in six months you can be a new man....I suggest yoga and pilates and of course of believe everyone should be in some form of the martial arts...

Goggle diet for heart health....if you don't like to cook or find it hard to change your diet, buy a juicer  Jack La Lane has one at kmart for under 100. dollars, it comes with instructions and drinks to make...

If you are over 50, start taking Lycopene...I would even start this in my fourties  to ward off prostate cancer...

I do also believe in praying  of some kind...this can be in the way of doing a kind act for someone everyday...I believe this is the best kind of prayer...


You asked me about the Estim unit...I don't have one of those, I saw it on another site, you can goggle it.... The Dr. HO Massage unit I have you can also goggle, it makes ones muscle twitch, very strong, your penis is not a muscle, it is just tissue and nerves.....Because of the verapamil delivery with the physion machine and some results with saline and the thought it might be the electric current is why I'm looking at these....

Take care and have a bless day....
Rico

[Hawk]

Hopeful,

I think the supplements Rico outlined, have a real impact on ED.  His other recommendations can also have an impact.

ED is so complex and erection can be interrupted at so many phases that it is difficult to generalize.  Each phase can also have many things that interrupt the process.  If your ED is sudden with Peyronie's Disease, it is much less likely to be general heart health and more likely to be venous leakage caused by plaque placement, not by scar tissue in the vessels but near them that may prevent the veins that drain the penis from getting squeezed shut.

Did you have any ED prior to Peyronies Disease?
was the onset gradual or fairly sudden?
Is your desire for sex similar or has it suddenly decreased
Do you get nite-time erections?
Are there any situations or positions that seem to impact your erections (standing, lying on your back etc?)

These all give clues.  It could be the seemingly obvious Peyronies Disease related ED, or a symptom of other medical conditions.  Many issues like alcohol and cirgatettes can have an impact.

Also, keep in mind that just because a supplement approach is taken does not mean it is safe.  Some of these supplements can raise or lower blood pressure etc.  If you have a heart condition that prevents the use of ED drugs, check with your doctor before jumping on supplements.

[Hawk]

In reply to some Arginine discussion on the oral treatments topic, I post the following.

First understand that with no ED drug or supplement I can get only about a 2 or 3  on an the erection scale (6 is minimum that is suitable for intercourse).  Normally a 100 mg Viagra takes me to a 5 which I refer to as a stuffable erection which is enough to drive 2 people crazy.

the erection scale for those unfamiliar
0= no response
2= plumping out but still clearly flaccid
5=stuffable meaning you may get penetration if you kind of use your hand to force bood toward the end but it does not work.  
6=minimum for actual intercourse
8=solid erection that most any man or partner would say falls in the realm of a normal erection
10= a diamond cutter that is as hard as any erection experienced at any age.

I started with 2 500 mg GNC Arginine capsules 3 times per day.  With in 30 min of taking 2, my penis was very noticeably full but flaccid (about a 2 or 3 with no stimulation)  but they hurt my gut just enough that it was nuisance.

I switched to GNC 1000 MG arginine horse pills.  Two of those (twice the amount) did not hurt my stomach at all but it also did not give me the rapid "plumping out" that the capsules gave.

Two 1000 MG horse pills taken with a 100mg Viagra do give me the boost I need for a 6 on the erection scale.  The difference between a 5 and a 6 is life changing.  I am now on Puritan Pride 1000 mg pills that are indistinguishable from GNC in look and action but are much cheaper.

Why do the capsuls from the same manufacture seem to have more positive effect and more stomach upset than the pills.  Do they dump the contents into your system quicker?  Was it because I was new to the supplement when I took the capsuls? Is there some qualitative difference between the two?

By the way, 1/2 of a 50 mg trazodone gives me night time erections of at least a 9 just as a comparison

[Rico]

Hawk I figured out what you need to do, have sex in your sleep, I know a couple of women who have prefected it:)...

Rico

[percival]

Hawk
I really like your scale to quantify erections. If it is yours then it should be named after you - like the Beaufort Scale for windspeed.
Regards,
Percival

[Hawk]

I wish I could say it was mine.  I always aspired to have erections associated with my name.  It would really impress the women  

Actually Dr. Mulhall's nurse introduced me to the scale when she was teaching me how to inject bimix.  We would communicate 2 or 3 times a week in terms of dose adjustment and where I was on the scale.  I have encountered it elsewhere though so it must be an accepted with doctors treating ED.  They may use it in the porn industry also.  

[Will]

Hi everyone...am 35 years old and been diagnosed with e.d. which is secondary from the peyronies disease...was diagnosed approx 4 years ago.  my physician is a specialist in Peyronies Disease and ed.  Viagra once worked wonders, but after I was involved in an accident, which left my hip crushed, it does not provide nearly the quality of erection it once did.  Tried all oral ed meds and none work.  The dr placed me on shots for ed which worked like a dream in the beginning, but now does not work as well.  Had blood flow tests performed and the results of that state I do have good blood flow, but I have leaky veins.  I have religiously used the soma correct for approx 2 years with little or no effect.  I have been using verapamil cream (80mg) daily for the past 5 months which has done little or nothing.  This is breaking my wallet.  The dr advised to try trimix shots very often, such as daily, to see if any positve effect is noted.  I am debating on trying this.  Been spending over $100 monthly on shots and $50.00 monthly on the verapamil cream for months with poor effects.  This month when I saw my urologist he presented me with the last resort... the inflatable penile prothesis.  This is the only alternative I have now, and am debating seriously about have the surgery to have it placed.  I am very concerned about the length that could be lost and the surgeon advised the most this can be is 1 centimeter (1/2 inch).  He explained that most men who have the penile prothesis are older men after having their prostate removed from cancer.  The dr advised that having your prostate removed results in a smaller penis, that is why most men who elect to have the prothesis complain of smaller erections (this is mostly due from having the prostate removed).  This dr advised of having  installed over a thousand of these penile prothesiss', and rarely encounters a problem.  He advised most are now lasting from 15 to 20 years with no problems.  He said I would probably have to have 2 in my lifetime.  He thought I would be happy with the results...he said it made the penis hard as a "brick" when pumped up.  He also told me that since I had such good blood in-flow...this would continue, even with the prothesis, for even a better outcome.  Oral ed meds, muse, and the soma correct can still be used, if desired.  He also mentioned that the suspensatory ligament could be cut during the surgery which results in more penile length, and then placing the prothesis.  He said this could result in a slightly longer penis to where no length is lost due to the prothesis, and actually could gain some length...but he warned of it probably no alot.  He did not recommend having the suspense ligment cut, stating it can cause further scarring, but advised he does do the surgery.  He did advise the penis would not be anchored up during erection anymore, but rather would point more downward during erection.  So this is where I am...and is one of the biggest decisions in my life.  I would like to hear from someone my age who has had the penis prothesis and their opinion, or anyone who has had the implant.  It seems as if literature is limited on the internet about these...never come across many testimonials of people who had these done.  If anyone can help me in this endeavor, please do...Thanks....

[Hawk]

Will,

A few quick thoughts before I leave.  Maybe I read your post to quick but this my input until I reread tomorrow.

Will, you are young and many breakthroughs in ED will hit in the next several years.  A prosthesis is forever (maybe, unless some tissue regeneration developments pan out).

Have you tried a constriction ring commonly call a "cock ring" ?  That should constrict the veins that are near the surface and allow the arteries to fill the penis.  they come in all types.  Actis is an adjustable loop that is made for that purpose.

You said,

He also told me that since I had such good blood in-flow...this would continue, even with the prosthesis, for even a better outcome.  Oral ed meds, muse, and the soma correct can still be used, if desired.  He also mentioned that the suspensory ligament could be cut during the surgery which results in more penile length, and then placing the prothesis.  He said this could result in a slightly longer penis to where no length is lost due to the prothesis, and actually could gain some length...but he warned of it probably no a lot.  He did not recommend having the suspense ligament cut, stating it can cause further scarring, but advised he does do the surgery.

I am no doctor but some of that seems flat wrong.  The cavernosa tissue is totally removed to put in a prosthesis.  You penis can never fill with blood again.  It fills with fluid from the hydraulic pump.  It is crazy for him to say you would have good blood flow.  The blood flow would have nothing to do with erection.  What would you use a soma correct?  It could only draw the same fluid the testicle pump pumped into the penis.  Unless I know nothing, you could never use ED drugs with an inflatable prosthesis!  ED drugs interact with a process to gorge your penis with blood.  Your natural blood erection will be totally replaced.  Also, there is no need for such drugs for the same reason.  You pump saltwater into the balloons inserted into your penis for a rock hard erection (it feels slightly unnatural and not spongy not pliable).  I am sure there was a communication breakdown between you and the doctor on a few of these crucial points.  There are videos of inflatable prosthesis surgery on the Internet.  I will try to find them when I get time if someone does not find them first.

I also think no informed person in your situation would ever consider cutting their ligament.  

[George999]

Will, I agree with Hawk on this.  I definitely think you should get a second opinion from another Peyronies specialist, preferably one at a major University Medical Center who is familiar with the latest treatments like the Pentox regimen.  Things are moving so very fast in this field, if I were in your shoes, at the age of 35, I DEFINATELY would not choose surgery, at least not until I had pursued every possible alternative, and that means seeing at least one other doc and perhaps even a third.  After all this is a very major surgery with a potentially huge psychological impact.  Like Hawk, I am not a doctor, but the advice you are getting sounds a little suspect to me.  Many top Peyronies specialists are truly surgeons in the real sense of the word.  They LIKE to do surgeries.  They BELIEVE in the surgical approach.  They will not necessarily tell you all of the current options or of options that might be available in the near future like collagenaise.  Be VERY careful!  You have a long life ahead.  Don't make a hasty irreversible decision based on what might turn out to be poor advice from someone who might actually be in a position to profit from your misfortune.  Remember, the doctor may be a great specialist, but it is your penis that is going to get remodeled, not his.

- George

[Angus]

This is a doctors website (Eid) that has a long no-holds-barred video of inflatable prosthesis surgery. The website also has pages with still pictures of men after the surgery. I'm just listing the site for information purposes (not promoting or bashing) and as a source of a decent procedure video that seems to load and play properly.

http://www.urologicalcare.com/index.html

 Heads up: You might want to grab a glass of wine before viewing this.

[DannyOcean]

I'm about halfway through a book called The Hardness Factor and so far it's very good.  I would highly recommend this to anyone suffering from ED.  It might not be a cure-all but there's some solid information in there and your overall health will benefit significantly from the recommendations.

[Will]

Thanks everyone for the support and your replies.  And yes, I have tried the Actis Ring numerous times, but it never works.  Regarding the penile prothesis surgery, this surgein explained to me the corpus Cavernosum is not removed, but rather remains, while the implant is placed.  And yes...he did say the cavernosum would be damaged due to scarring from the implant, but would more than likely not be totally destroyed, thus using those ed drugs.  Maybe I just misunderstood...this conversation did stress me out.  The doctor did mention future therapies.  He seems to think gene therapy might not be the way because researchers are having trouble with side effects of gene therapy at this time.  he did mention tissue regereration and the growing of new corpus cavernosum, but adviswed this was in its infancy stage.  

[Hawk]

Will,

You must be able to get an erection with a VED.  Is that correct?  If it is, how do you feel about going that route and if it is not true could you give some input.  

[Will]

Hawk...I am unable to achieve a good enough erection using the ved for intercoarse.  I currectly have the soma correct and when using the smal and medium tube, my penis does fairly well filling up with blood.  However, when I use the large cylinder, I can never get enough bloood at the distal end...it is as if a major constriction caused by the Peyronies Disease begins at the middle of the shaft, so very little blood can pass through.  This is very noticable now when using the shots...the shots used to give me a normal looking erection, but now, since very little gets to the distal end, it results in a very narrow distal end, and no blood is getting to the head of the penis.  It is getting very deformed looking now.  Regarding your question about the pump, it just results in a very poor erection.  The docotr tells me to try more frequent shots and to start using 200mg of viagra at a time.  I am just getting tired of trying, but I want to have a normal relationship with a female as well.  This crap is going to break my wallet....

[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

[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.

[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?  

[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.

[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

[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.

[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]

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?

[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]

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

[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?

[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?

[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!"  

[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  

[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

[Liam]

Always available, unless you have close neighbors.

[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

[scott]

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

[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

[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

[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

[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.

[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).