ED - Erectile Dysfunction (Started August 2005)

[Hawk]

Welcome to the Forum Simone.  We all thank you for contributing by posting questions and comments.

Simone, first I would highly recommend staying away from yohimbe.  It is not a safe herb in my opinion.  If anything, try Horney Goat Weed (HGW).

Also, every one should keep in mind that Afrin and every other oral or spray nasal decongestant is a vaso constrictor.  Sprays MAY restrict their activity to the nasal cavity but drugs like sudafed are the first line of defense to get rid of an erection that lasts too long.  Taking these drugs with Viagra , especially the oral drugs is likely counter productive.  While I have had many of the side effects including significant delayed onset back aches from Cialis, I have never had them interfere with sleep.  I now gauge the "ready period" after taking Levitra (my preferred drug) by the stuffiness, and the facial flush.  I do not mind it at all.  Fortunately none have ever given me a headache.

I like the idea of Cialis and may try it again but those back aches last too long and are NOT worth enduring.  I have researched in vain to find out exactly what caused the delayed backache.  Does anyone know?

[Hitman]

Hawk, I'll take a wild guess and say that its probably because the drug inhibits another enzyme, which is responsible for those muscle aches.

[Hawk]

I appreciate the guess but I even if that is accurate, it still leaves much unanswered.  What other functions are impacted by the same process. Why would it only impact back muscles as opposed to biceps or quads?  

I have wondered if it is in any way connected with kidneys since that is the area the pain centers around.

[Kimo]

Simone,,i agree with Liam,,,,try using a lower dose of viagra...I've been using Viagra now for over 10 yrs. In the last couple of years i have reduced my dosage from 100 mg to 50 and then to 25 mg....When using the 100 after a few years i didn't have any side effects any more,,,maybe a little once in awhile, but now when using only 25mg i don't have any at all but have good erections..I agree that once in awhile a 100 mg will give ya rock hard and thats good, but i don't need it everytime....

Like Tim says,,,tinker with the dose and see what works best for you..And also,,my pharmacist says just take a tylenol if you get the headaches, it works great.

It takes a little time to see what works good for you,,,,Hang in there.

Kimo

[nemo]

Kimo, you've been on viagra longer than anyone I know - so I'd like to ask you a question.  Have you ever had times when the viagra seemed to not work as effectively?

I use 25mg due to Peyronie's leaving me with a head that doesn't get good blood flow like it used to.  The viagra definitely gives me better erections.  I've only been using viagra in my current relationship (about 2 months), but something weird happened.  When I started using it a couple months ago, I would get semi-erect or fully erect just from making out prior to sex.  Then one day, like a light turning off, I didn't get that pre-sex wood ... and I think I panicked, because I'd already been postulating "what if the viagra ever stops working?"  I don't know if it was psychosomatic or what, but I started having performance anxiety.  I think it's a mix of being only 36 and using  viagra ... I have anxiety about a future where I'm dependant on a drug for good sex ... and what if the drug stops working.  

I jumped to 50mg, and it does the trick, and I'm now on L-arginine, which I think is going to allow me to drop back down to 25mg of viagra.  But I'm just wondering over your 10 years of viagra usage, has it been the same exact effect every time, or are there times when you find it to work better than others?

Thanks for your advice.  Clearly, the drug is still working just fine for you after a decade, which makes me feel better myself.

Nemo

[Kimo]

Nemo

Yes, i think it's mostly in our minds because thats where sex starts first anyway's....I had a very similiar experience but a little different a few years ago,,had to see a sex shrink about something, couldn't believe it was happening to me ,,the hornest man on earth......HA.....

The viagra has always worked well but for awhile i could not ejaculate,,,he told me to just relax and enjoy the feeling of having sex and it would come back...He was right.. I learned to relax and enjoy the moment and i haven't ever had the problem anymore...

I do know that 25mg of viagra dosen't give me the same hard as 100mg but i have a hard time using that much anymore because of the damage i sustained from getting a parasite 2 yrs ago...It really did a number on my system, so now when i take 100mg of viagra it makes me feel bad in my gut..If i am feeling pretty good and want a good hard i will take a 100mg,,but most of the time now i do a 50 or 25 and i get by without any gut pain...Another thing for me if i take it late in the evening i don't get much good rest, it makes my system work all night, erection after erection which i don't really mind because it feels good to have one, but then i don't rest...

So, my suggestion for you is to relax and enjoy the moment, my opinion is that you are having performance anxiety,,,i've been there..Another thing don't worry about becoming dependant on viagra, even tho i have been using it now for about 10yrs or more i can say that almost 50 percent of the time now i can get a good enough hard for sex without taking anything.
I want to try using HornyGoat Weed but am shy because of my sensitive gut....L arginine really gives me a gut ache so i can't use that either.

I hope this helps some, also always feel free to e-mail me if you have anything you want to talk about, i'm good about answering..My e-mail address is in my profile...

kimo

[Ptolemy]

Has anyone tried Super-L? It sure works for me. Directions call for 2 capsules, one capsule is all I need and works for me in about an hour and lasts for 3 to 4 days. Side effect for me are 2 - slight headache and slight nasal congestions for the 1st day. I've used it about once a month for a couple of years.

Ingredients (and comments of each) are as follows pulled off the website of a supplier in Canada:

Main ingredient
Eurycoma Longifolia, or popularly known as Tongkat Ali

Each Libidus capsule contains:

Eurycoma Longifolia (154 mg) - The most potent herbal aphrodisiac in the world.

Flos Catharmi (24.5 mg) - Activates blood circulation to genitals, removes blood stasis and relieves pain.

Rhizoma Cucurmae Longae (49 mg) - Helps to eliminate blood stasis, promote the flow of "qi" to genital area and relieve pain.

Ginkgo Biloba (49 mg) - Improves oxygen flow to the brain and to other organs to strengthen heart, lungs, skin and genital organs.

Herba Epimedii (24.5 mg) - A well-known herb that has been used for centuries to treat impotence, reinforce seminal emission, strengthen tendons, bones and limbs, and relieve rheumatic conditions.

Herba Cistanches (24.5 mg) - One of the most popular and potent tonic herbs that enhances sexual function, treats impotence and strengthens the back and knees.

Astragalus Membranaceus (24.5 mg) - To reinforce "qi" and strengthen the superficial resistance; also helps to accelerate new tissue growth.

These ingredients may have changed slightly when the product changed from Libidus to Super-L.

[Kimo]

Ptolemy

Can you post that website for us, i'd like to read more about that product and the prices....Sounds pretty interesting.....

kimo

[Liam]

FDA News
FOR IMMEDIATE RELEASE
P06-97
July 12, 2006
Media Inquiries:
Kimberly Rawlings, 301-827-6242
Consumer Inquiries:
888-INFO-FDA



FDA Warns Consumers About Dangerous Ingredients in "Dietary Supplements" Promoted for Sexual Enhancement
The U.S. Food and Drug Administration (FDA)  is warning consumers not to purchase or consume Zimaxx, Libidus, Neophase, Nasutra, Vigor-25, Actra-Rx, or 4EVERON.  These products are promoted and sold on web sites as "dietary supplements" for treating erectile dysfunction (ED) and enhancing sexual performance, but they are in fact illegal drugs that contain potentially harmful undeclared ingredients.  These products have not been approved by FDA, and there is no guarantee of their safety and effectiveness, or of the purity of their ingredients.

FDA advises consumers who have used any of these products to discontinue use and to consult their health care provider.  FDA encourages anyone experiencing ED to seek guidance from a health care provider before purchasing a product to treat this medical condition.
 
"These products threaten the public health because they contain undeclared chemicals that are similar or identical to the active ingredients used in several FDA-approved prescription drug products.  This risk is even more serious because consumers may not know that these ingredients can interact with medications and dangerously lower their blood pressure," said Dr. Steven Galson, Director of FDA's Center for Drug Evaluation and Research.

Chemical analysis by FDA revealed that Zimaxx contains sildenafil, which is the active pharmaceutical ingredient in Viagra, a prescription drug approved in the United States to treat ED.  The other products contain chemical ingredients that are analogues of either sildenafil or a pharmaceutical ingredient called vardenafil.  Vardenafil is the active ingredient in Levitra, a prescription drug that, like Viagra, is approved in the United States to treat ED.  There is no mention of any of these ingredients in any of the illegal products' labeling.

This deception poses a threat to consumers because the undeclared ingredients may interact with nitrates found in some prescription drugs (such as nitroglycerin) and lower blood pressure to dangerous levels.  Consumers with diabetes, high blood pressure, high cholesterol, or heart disease often take nitrates.  ED is a common problem in men with these conditions, and they may seek products like the ones noted above because these products claim that they are "all natural" or that they do not contain the active ingredients used in FDA-approved ED drugs.  In addition, because the manufacturing source of the active ingredients in these "dietary supplements" is unknown, there is no assurance that the ingredients are safe, effective, or pure.

FDA Warning Letters to the firms marketing these products state that the products are illegal drugs based on claims made for the products or their ingredients.  The letters also state that the products' labeling is false and misleading because it fails to disclose the presence of the chemical ingredients or the potential side-effects associated with the products' consumption.  FDA instructed agency staff to stop the importation of Libidus, and the agency recently stopped a shipment of 4 EVERON from entering the United States.  Based on responses to these actions, FDA may take additional enforcement steps.

Today's actions follow a first-of-its-kind FDA survey, in which the agency analyzed 17 dietary supplements marketed on the internet to treat ED and to enhance sexual performance in men.  "Our survey found that many of the so-called 'dietary supplements' marketed as treatments for erectile dysfunction actually contain non-dietary chemicals, including chemicals used as active ingredients in FDA-approved drugs.  The claims made for these products were in fact claims made for the undeclared non-dietary chemicals they contain, which rendered them illegal drugs.  FDA is committed to protecting the public health by removing such illegal and dangerous products from the market," said Margaret O'K. Glavin, FDA's Associate Commissioner for Regulatory Affairs.

####

SOURCE: http://www.fda.gov/bbs/topics/NEWS/2006/NEW01409.html

[Kimo]

Thanks Liam, for the good info..Your right, these things should always be researched throughly...

kimo

[Hawk]

I've only been using viagra in my current relationship (about 2 months), but something weird happened.  When I started using it a couple months ago, I would get semi-erect or fully erect just from making out prior to sex.  Then one day, like a light turning off, I didn't get that pre-sex wood ... and I think I panicked, because I'd already been postulating "what if the viagra ever stops working?"  I don't know if it was psychosomatic or what, but I started having performance anxiety.  I think it's a mix of being only 36 and using  viagra ... I have anxiety about a future where I'm dependant on a drug for good sex ... and what if the drug stops working.  ...  But I'm just wondering over your 10 years of viagra usage, has it been the same exact effect every time, or are there times when you find it to work better than others?

Nemo,

Viagra is prevented from absorption by any dietary fat eaten within 3 hours prior to taking the drug.  Also, any adrenalin release from stress, anxiety, fright, fight, or flight syndrome will counteract vaso dilation.  Adrenalin as well as antihistamines attach to adrenalin receptors and cause vaso constriction.

SO - Diet, anxiety, and some over the counter drugs can impact the effectiveness of a given dose of Viagra.

[nemo]

Thanks, Hawk.  I think adrenaline was the culprit.  I'd be so nervous I could feel my stomach muscles tighten up and there's no way that's good for an erection.  

On a side note, I've been taking L-Arginine, 3 grams a day ... and the other night I took 1500mg about an hour prior to taking 50mg of Viagra, and WOW.  I think the two worked in tandem because I was rock hard well before any clothes came off.  I'm thinking the arginine will allow me to drop back down to my prefered dose of 25mg of viagra, because they arginine definitely seemed to supplement the V ... at least it sure did that night!  

Thanks for all your counsel.

Nemo

[Ptolemy]

I wasn't aware of the US FDA warning but I was aware of a similar warning from the Canadian equivalent. See below:

Natural Sex Enhancer Libidus' Potential Health Risks
25 Sep 2006

Health Canada is warning consumers not to use the natural health product Libidus because it contains an undeclared pharmaceutical ingredient, a modified form of vardenafil, which is similar to the active pharmaceutical ingredient found in the prescription drug Levitra. The use of Libidus could pose serious health risks, especially for patients with existing medical conditions such as heart problems, those taking heart medications, or those at risk for stroke.

Libidus is advertised as a natural sex enhancer for men and women and is not authorized for sale in Canada. The Canadian importer has been contacted and is recalling the product. Consumers who have purchased Libidus are warned not to use it and to consult with a health professional if they have used the product and have concerns about their health.

Products containing vardenafil should not be used by individuals who are taking any nitrate medication because combining these products could result in the development of potentially life-threatening low blood pressure.

The use of products containing vardenafil has also been associated with serious side-effects which include serious cardiac events such as heart attacks. In rare cases, the use of vardenafil may result in penile tissue damage and permanent loss of potency.

This product is manufactured in Malaysia by Bio-Gulf Sdn Bhd and imported into Canada for distribution by NorthRegentRX, of Winnipeg, Manitoba.

Health Canada also advises Canadians to contact the Health Products and Food Branch Inspectorate at 1-800-267-9675 if they find Libidus for sale in Canada. Health Canada has notified the Canada Border Services Agency to detain any shipment of Libidus detected at the border.

Consumers requiring more information about this advisory can contact Health Canada's public inquiries line at (613) 957-2991, or toll free at 1-866-225-0709.

To date, no adverse reactions suspected to be associated with the use of this product have been reported to Health Canada.


I suggest the use of any sexual enhancer to be used with caution, especially herbs, supplements and vitamins that haven't gone through the rigors of testing drugs have to go through. However, I'm a little sceptical of the pharmaceuticals that have their lobby groups to persuade the governing bodies. We all know all to well the track record the pharmaceuticals have for hiding facts.

I would draw your attention to the last statement of the Canadian warning which has me preferring Super-L over Viagra or Levitra or the others blessed by the FDA.

To date, no adverse reactions suspected to be associated with the use of this product have been reported to Health Canada.

Don't know if the FDA approved drugs can make the same claim. However it is best to use with caution. I typically use only 1/2 of the recommended dosage and then not often.

[nemo]

As I've been concerned about having virtually no, or weak, night time erections for the last few years, I had my urologist do a testosterone test.  He says my numbers are normal except for the "inactive testosterone" which is low (didn't say how low).  He didn't seem to care that I don't get nocturnals, but I do.  I feel like I need them if there's ever any chance of reversing some of the Peyronie's damage (a little softness in the head when I have erections).  

I use viagra for sex, which works, but as I've mentioned before, I'm 36 and I worry about long term use.  So, I wanted to get to the bottom of why I don't get nocturnals anymore, hoping this might clear some things up.

Anyone know what "inactive testosterone" is and how it would or would not affect erections?

Thanks,
Nemo

[nemo]

Related to my previous post, I'm 36 and worried about long term viagra use insofar as losing efficacy.  Would you please sound off if you're using viagra, along with your age, how long you've been using V, and if it's diminsihed in effectiveness at all?

I'd really appreciate it.

Thanks,
Nemo

[Hawk]

Nemo,

I am not the best case study for you question since I have ED partly because of surgery and partly because of Peyronies Disease.

A casual answer to your question can easily give misleading impressions.  If I ask the question; "suppose you never took Viagra.  Do you suppose your erections will gradually get weaker over the next 2 decades?"  The answer would likely be yes.  So, a person taking Viagra over a long period will also very likely say that their erections diminish over a long period.  The same is more true of a person with Peyronies Disease.  If they have progressive Peyronies Disease they may get progressively diminished erections as time goes on. In other words, however they rate a natural erection or their Viagra erection, both may well rate lower in years to come.  The Viagra has nothing to do with that phenomenon.   This has nothing to do with tolerance or resistance to the drug.

There is no evidence that men build up a dependence, a tolerance, or a resistance to ED drugs.  In fact, there is some evidence that the benefit from erections, and the reduction of TGF-B1 from Viagra may slow this natural decline in erection.

[nemo]

As always, your counsel is much appreciated, Hawk.  You make a good point.  Thanks.  

Nemo

[Kimo]

Nemo

I've been using viagra now for arond 10 yrs and it works just as good now as when i first started using it...Matter of fact i have cut my dose down from 100mg to 50 and sometimes 25mg....Because of my age and the damage i recieved from a parasite i got 2 yrs ago...If i am feeling real good i will take a 100mg, but if i am not feeling good it will make my stomach and intestines hurt afterwards,,i don't know why, so i just cut back and avoid the pain...I won't stop taking the viagra because the benefits out weigh the pain....I have just learned when is the best time to take it....

Another thing i have been noticing, i'm kinda needing the viagra less and less, have been able to get a normal erection more often lately which is kinda nice too....After taking it now for over 10 yrs i really don't notice any side effects much anymore......

This is just my observation's,,,,,,,,,,,,kimo

[california]

Is anyone on this board still taking trazadone and if so, is it still helping with NTEs?  My uro won't prescribe me it b/c of priapism risk (though with a venous leak, I would be happy to see it stand on end for longer than a few minutes anyway).  Have any of you had any problems with this?  Thanks in advance.

[nemo]

My Uro wouldn't prescribe it to me.  Said because I use viagra, he was worried about priapism.  Also said, "We don't really know what causes NTEs, and I don't think you should worry about not getting them," which I thought was a little dismissive for a Uro ... seems obvious that NTEs would help maintain and in our case restore penile tissue health.  But anyway, he said, "some docs are prescibing this, but I don't."  

[Hawk]

Has your doctor ever known of anyone to have priapism with 400mg of trazadone a day?

The answer is no, so why would he worry about a person with some erectile issues getting priapism from 25 mg?

I agree that I would not take trazadone and Viagra within 12 hours of each other, but you have control over that.

[Kimo]

I took trazadone for awhile , 25 mg,,,and i didn't get many NTE's let alone a good 4 hour hard....The main thing it did for me was make me sleep well, but i did wake up every morning in a fog..The fog would last about 15 min to half hour which i didn't care for and thats why i stoped taking it..

Trazadone was very inexpensive.......

kimo

[ninjagaiden]

Hawk, Kimo, thanks for your information about the use of viagra.

Hawk, I think you've just got a great reasoning. Your point over the "natural" decline with or without Viagra and the potential beneficial effects of the use of Viagra are really reassuring me, if one day I have to take some. As I said, I'll start with natural supplements if they work.
Nemo, I think your fear of losing erections is really participating in losing your erections.
Take some viagra or cialis or any natural supplement that can help you, start with small doses, and I'm sure you'll never be dependant if you make a normal use of these drugs.

Now with my basic imagery : Just consider them as a "stick" to help you walk. When you'll see you can walk without the stick, you can get rid of it, like Kimo did. You can have resort to the stick again, but it's temporary.
I know, I should write novels  

BTW, concerning your Uro, I think that NTEs are important, otherwise they would not be natural for the average man. I think it's a normal stuff, and they are necessary.  

[nemo]

I was just reading about a drug called Uprima that appears to have been discontinued.  It was supposed to be a rival to Viagra, and worked in a different way - by enhancing signals from the brain to the penis, not like Viagra, which works on the tissue level.  Uprima was also a sublingual (under the tongue) drug that apparently worked in about 15 minutes.

Did anyone here ever try Uprima?  

Nemo

[Old Man]

Nemo:

Uprima was supposed to be "the thing" in ED drugs. It failed miserably on the market, so it was pulled and I suppose now is totally unavailable.

It would not be wise to try any so called generic forms of it. It was a quick acting drug that when placed under the tongue entered the body rapidly to do its work. In our prostate cancer survivor support group, several men tried it without much success.

Old Man

[jackp]

Uprima
On the advice of my former Uro about 4 years ago while on a trip to Cancun Mexico I tried it. Did not work well. I understand that it was taken off the market in Europe.
Jackp

[nemo]

OK guys, I just had my Uro send me the copy of my testosterone report.  I wanted it because I don't get nocturnal erections for about the last 4-5 years, and if I do they're weak.   On the phone the doc told me "your free testosterone is fine ... don't worry about nocturnal erections."  I was less than pleased with that answer so I ordered the copy myself to see the details.  

I'm 36 years old.  My Total Testosterone was 235 (which he even wrote on the report was slightly low).  % Free is 1.71 ... Testosterone, Free 40.2pg/mL ... Prolactin 6.1ng/mL ...

Does anyone know enough about this to tell me if I'm correct in thinking my low total testosterone is probably the cause of the lack of night time and spontaneous erections?  What kind of doctor could I go to to follow up on this?

Thanks,
Nemo

[swimfly]

Nemo,

I don't chime in very often but your's caught my eye.
A 36 year old man should have a T level well above 235.
Try seeking a second opinion from an Endo. One who specializes in hypogonadism.

Be well,  Swim

[Kimo]

Nemo,,

I just had the same tests done last week..On the total testosterone i can tell you that 200 is considered zero...Mine is at 314, i'm supprised it's that high.....My free testosterone wqas 9.5 pg/ml , this one i don't know that much about. i'm not that read up on......

I do know that low testosterone is a reason for no nightime erections and low or no libido......I had a URO a few years ago that told me those numbers were just normal for my age and he didn't offer to do anything about it so i changed doctors and my new uro at the time said he could fix it and did....i used the androgel first and it drove my testosterone level back up to 831 and i  just about lost my mind,,,ha.....Then he changed me over to  the adroderm patch and it worked a lot better for me,,it kept me at about 700 the rest of the time......

Hope this helps,,,,,,,kimo

[jackp]

Nemo
Had my T checked 10/24 and received the report from my PCP 11/8.
Let me say that for years my T has been low and now PCP has raised my shots.
Quest Diagnostic says on the report
"aging men with clinically significant Hypondogal symptoms and testosterone values in the rarange of 200-300 ng/dL or less, may benefit from testosterone treatment after adequate risk and benefits counseling."
Three weeks b4 this test I had a T shot of 400mg T. My test results were;
Testosterone, Free and Weakly Bound
Testosterone, Total 120L out of rarangee Low Range 241-827 ng/Dal
Testosterone, Free and Weakly Bound Sex Hormone Binding Globulin 32 normal range 17-54 Mil/L
Testosterone Free 24L out of range low, Range 34-194/ pg/ml
Testosterone Free and weakly bound 49L out of rarangee low. Range 84-402 ng/Dal.
Estrada E2 24 normal. Range 13-54pg/ml.
Shots increased to 600 mg every three weeks.
My PCP wants to get my T levels stable at around 750. The first week or so after the shot I feel great. Horney but still the Peyronies plaque in my copra prevents erection firm enough for penetration.
My uro's in the past have only tested total T. My PCP took over my T shots when I was unhappy with the uro, He wants to work with me in ways the Uros never did. Uros would only give me 300 mg shots every three weeks. I know my levels have dropped over the years.
All this to say that Testesterone treatment will not help with erections when you have plaque (scar tissue) in the copra from Peyronies and PGE1 or Trimix injections.
After the failed attempt at the Implant Surgery last month the uro said that no wonder you have such trouble with erections with all that scar tissue.
Will discuss all this with my next uro in December. (Second Opinion on implant)
Sorry this is long.
Jackp

[nemo]

Guys, I'm really glad I asked.  Thanks.  I think I'm going to take that test result to a new urologist for a second opinion.  I think I may have discovered the missing link I was looking for.  I can't believe a Uro would tell a Peyronie's patient "don't worry about not having NTEs" ... that just sounds like poor advice.  It seems intuitive that blood flow at night is good for the tissue/healing/etc.

Thanks,
Nemo

[Tim468]

Jack,

The low testosterone is known to promote fibrosis in the penile tunica. It may BE the reason you slipped backwards.

It is also possible, but not proven experimentally, that testosterone treatment will help reverse that change.

In rabbits, those who had their gonads cut off developed fibrosis over time (and not a very long time - but I do not know how a rabbit week compares to my week!). Those who had testosterone treatment did not get the fibrotic changes. This strongly suggests that it was the lack of testosterone in the castrated rabbits that led to the fibrosis (as opposed to something else in the gonad).

However I am uncertain if T therapy alone will restore a fibrotic penis. It may be that a combination of aggressive T therapy, combined with Pentox, Viagra and Arginine is required to recover.

Tim

[jackisback]

Hello to everybody, I just registered.  I think this looks like a really great site, I will try to find some more time to look around it and at a time when i can be discrete for a while.  I post here b/c apparently you cannot post new subject threads.  Please let me know if there is a more appropriate thread I should move this to (or a way to start my own subj).

I am 21 years old, a year ago my erections were rock solid with a libido that encouraged them.  But by March of this year I was sure that something was not the same.  When erect, my penis appears straight, and then halfway through it bends to the left.  When flaccid, I can easily twist my penis to the left, but not to the right.  I never heard any loud breaks or had any painful experiences, my penis simply started to curve to the left, and the quality of my erections suffered.  One possibility I thought was that I had been on Propecia for two years.  Shortly before my symptoms I had stopped taking the drug for a few weeks to "shock my system".  Most docs claim Propecia is unrelated and cannot cause longterm sexual side effects, but many people online will swear different.  The quality of my erections got worse until I finally discontinued the drug permanently in June.  Not much improvement since then (if any).  To be honest, I was a 21 year old virgin when I saw a Urologist about this in July.  I was told I didn't need to bring pictures of an erection (although he did ask if i had any when i was there).  Upon seeing my flaccid penis, my doctor could notice a curve, but he said he did not believe it was Peyronies, but rather something I'd had my whole life most likely.  I think if anyone in this world is familiar with his penis, it is a 21 year old American virgin, and although I understand he's a professional, there is absolutely no way that my penis has been bent my entire life, and I just haven't noticed it, or that this problem is all psychological.  The doc said there was a surgery was an option, and offered viagra.  The thing is, I'm still dependent on my family, I'm not about to tell my parents I can't get hard and I need surgery and Viagra.  They'd just think I was crazy anyway. (and of course surgery is not something i want to do quickly, and telling the pharmacist i need viagra can't be fun either)  The doc told me not to bother him again until i'd gotten laid (although he phrased it more kindly).  My libido has fallen some, but not as much as my erections, and I still do masturbate and feel frustrated after several days without, but i do not usually get even halfway decent erections (it's never what i would consider full and hard).  Of course I was depressed about this, but as a virgin it didn't seem to be any worse than my life before that happened.

But then I dated this girl for a month and a half.  She is really great (although we are now geographically separated----for at least several months), and despite the fact that i felt great and comfortable and honestly not really THAT much anxiety about my hardness (since after all, any problems were futile to freak out over), or at least as much as one could be no anxiety.  But definitely i felt very comfortable and good with her, and I can't imagine that anything could be psychological.  I was able to get a decent enough erection to have sex, although I did have difficulty staying hard esp w/ a condom.  With a condom on I could barely feel anything.  I know it's not good to have unprotected sex, but at this point the risk in a committed relationship seems irrelevant given the state of my member.  She said it was still good sex (w/ condom), but she also said my penis was much bigger w/out a condom, so i know she was saying that partly (probably mostly) for my benefit.  Whatever the case, sex, while pleasurable, could not be orgasmic from anything other than very fast movement, usually manual, and orgasms were difficult to come by.  This is not normal for a male 21 yo virgin, especially one that rarely masturbates anymore.  The first time you have sex you're supposed to be embarrassed that you can't last 1 minute, not that you cannot come.

Of course I want to see another Urologist, but I'm not in the country, i'd have to wait until after new years (and i will do that of course).  But I just wanted to hear if anyone had any thoughts on my condition or some advice.  Sorry for the long length of this message, but if anyone has questions please ask.

I really don't think about this very much honestly, I've spent years worrying about premature hair loss, I don't have the energy to spend all my time worrying about this.

BUT

recently I saw an article in WebMD/CBS referencing a patient who used FastSize traction device to increase his penis size, and how happy he says he is now, and more confident.  FastSize also claims to be able to fix Peyronie's and I am considering purchasing this product.  I've missed out on so much of my sexual prime already for various reasons, and I refuse to live my life missing out on more and being unable to have fulfilling sexual relationships.

Please let me know if the traction thing sounds like a good idea for me....I cannot wait two months for this (or even longer, when school starts, b/c there's no way i'm having a penis traction device mailed to my parents house where i'll be over the break).


*one more thing, i'm in decent shape, i look fairly fit, i'm definitely not fat or anything.  if everyone in worse shape than I is having this problem, then a huge percentage of people are having trouble with this, so that can't be the problem.

[nemo]

Jack, I was on Propecia for over a year in my late twenties and it DEFINITELY caused me erection problems.  I couldn't get a good hard even masturbating.  I quit the drug and in a couple weeks, would get back to normal.  I did this twice and it was the same, which to me said, "It's the Propecia."  I went to a Uro (because I wanted to stay on Propecia) and he said, "Well, I can give you Viagra but the fact is you're messing with testosterone, and I don't know if you want to continue doing that, given that you can see it's negatively affecting you." I had to make the hard decision to finally quit Propecia.  It was a hard decision, but it was the right one.

Subsequently, about three years later, I got a case of Peyronie's, and now discover that my testosterone is low (this is now about 6 years later.)  I think you should have your doctor (or any doctor) do a blood test to check your testosterone levels.  You may indeed have a mild case of Peyronie's but you may also have low testosterone which is impairing your erections.  You need to know for sure if only to rule that out.  

I would NOT mess with traction devices - you're likely to only hurt yourself.  Stick with legitimate medical quality stuff like vacuum erection devices if you feel you need to do some stretching - but consult your doctor first.

Good luck brother,
Nemo

[Hawk]

JIB,

Welcome to the forum and thanks for contributing a well written post.

I only have one comment at this point.  If you have the time and commitment, then I think you may want to try a quality traction device.  Traction is a significant commitment however.  

I have to take issue with the suggestion that traction is less "medical quality device" than a VED.  In fact, even though the study is extremely small and only a pilot study, one could argue that the traction device is the only one of the two devices with medically documented results.  There is no indication it can or has caused any more injury than a VED.  Further discussion on this topic should be posted on the Traction" or the "VED" topics.

[Hawk]

Here is a helpful link for greater understanding of you lab results.  This particular link is for testosterone but that is only one of a hundred such tests that can be searched on this site.  Note the tabs that cover various aspects of the test, what is being tested, and what the results could indicate.

http://labtestsonline.org/understanding/analytes/testosterone/glance.html

PS: Also, most lab reports show a normal range and bold any numbers that you have that are outside of that range

[Tim468]

Welcome Jack

I would ask your parents if it is possible to sit down to talk to them about something that is personal, difficult to talk about, and embarrassing. Then tell them the truth and what you are experiencing. I bet that the support will be tremendous and helpful. It will also let you figure out more adequately your options (ie medical Rx, surgical etc.). You do NOT want to scrunch up the nerve to talk just after you come off his health care plan!!!

I bet they will be so glad that you are not telling them that you're gay, they will feel relieved!

Anyway, you are right on - the advice was sort of silly. Attempts to reassure someone have to be based on reality - you cannot be made to feel better by being told that you don't really have a problem!

More than that, the finasteride (Propecia) connection is real for many men. It blocks some of the testosterone pathways and can lead to acquired hypogonadism. A effect of that an be fibrosis of the tunica in the penis. So determine if you may be able to get treated with testosterone if needed. YOu may need to go to an endocrinologist who specializes in fertility and this realm to get properly treated.

Second, go on something to reduce the inflammation. Start with vitamin E and branch out from there. There is lots to learn here so get busy reading - it is your penis that you need to protect from worsening.

Tim

[MUSICMAN]

I hope my question / comment is not one that the reply is that we went over that a long time ago. Well it seems that now that some time has passed, I seem to get night time erections but as I awake it disappears.  During the day it just won't happen. Note that I am not using Viagra or something else.
                                                          Musicman

[nemo]

Guys, I'm scheduling a visit to the Mayo Clinic in Arizona to get a full exam.  I want to know if my 235 testosterone (at age 36) needs to be addressed, if I have any thyroid issues, why I'm not getting night time erections, and whether I have a venous leak (I sure hope not).  I'll let you know how it goes.

In the meantime, my concern is the weird results I get with Viagra.  I've been using it for about 3 months.  In the beginning, I'd be semi-or-near hard just from kissing, hugging, etc.  Now, sometimes I am, but sometimes I need direct stimulation for a couple minutes.  The first time this happened, it really spooked me, and now I know I have some perfomance anxiety wondering "is it going to work right this time?"  

Once I'm hard, I KNOW the Viagra is working, as the erection is super hard, durable, stays firm for a while after ejaculating, and is ready for round two fairly soon.  But the fluxuation in pre-usage activity makes me skittish.  

I e-mailed one of those online doctor forums and asked if my low testosterone could be the cause, some days being high, somedays low, thus affecting the Viagra.  He said, "Typically you shouldn't see any fluxuation in Viagra" ... but I'd like your real world experience in this regard.  I'm a natural worrier, and not thinking of the V as my silver bullet makes me nervous.  

Thanks,
Nemo

[antony]

Hello Nemo and all:

For Nemo : Don't know precisely your case, mine is different , but one thing i saw on me: at begginning i was taking a 10mg of cialis and it was 'about' working good, even if i had lost penis size, sensitivity, etc, and after some months, it's the same as you, i need, even with 10 or 20mg of cialis, some minutes of manual stimulation for me having an erection -and as for me, a 'crap' one (but just enough to have sex, even if it's not good at all).
So i don't know if it makes less and less effect when you take it too often, especially when we are young. (and as for me  even once i'm hard, it doesn't work so much coz erection doesn't stay long time and is not so hard now). No idea, but i just saw it on me.


-All : I saw another doctor who is suposed to be 'specialist', who says he cannot feel any plaque of fibrosis. And as i had told you, even MRI shows a twisting at basis of penis (but this twisting/torsion is visible even with own eyes, no need of exam for that), but doesn't show any sign fibrosis. Despite of that, i have, as you know, total impotence, with cialis which works less and less, twisting, torsion, curvature, big loss of penile size, tunica albuginea which has become very hard, few elasticity when i stretch on penis,no sensation, even ejaculatory trouble, sometimes pain, all that after a shock during intercourse at begginning of 2007 and with no problem at all before. Moreover, i really feel now 'no blood circulation" in penis, as if its totally dead, cold, etc..

I take vit E and pentox for the moment with no result.

I don't know what to do when specialist keeps you only 5 minutes and just says 'there is no plaque, so it's ok, bye'...
Other doctor told it was symptoms of penile fibrosis.
Do you know if there can be fibrosis , but not under the form of big plaque, but small fibrosis, not visible at exams like MRI ?

I'm desesperate now, i've spent too much money in lots of doctors, i know no one will help me, and i cant imagine to put a penile prostesis so young, knowing its definitive surgery. Any advice or idea? Thanks

[Tim468]

Testosterone problems may make for some of the problems described (ie diffuse fibrosis). Also other problems with testosterone function (adrogen binding receptor, etc) may also lead to functional low testosterone even with "high enough" levels of free or total T levels.

Tim

[pal-31]

Hi Tim,

What would you recommend be done in this case.  How could one go about finding the testestrone level ? Could one take something non-prescription to try to see if it helps ?

Any information would be much appreciated

Thanks,
Pal

[antony]

Thanks Tim,

but how a testosterone problem would happen precisely after a shock, at the moment when it happened, i had a great libido, so i dont think the day before i had high testosterone level, and the day after, bad level that creates such symptomes. I was not in stress period or whatever, and i'm 26.

Anyway i did a blood analyses (i dont know if its precise one, good one, i just went to laboratory to make it coz doc had asked it) and my level is normal (i dont know to what it corresponds exactly, but the doc says its a normal level).

Do you know how to check what you tell me about? Is it by blood analyse?

So sadly i don't believe in that, i think about micro and diffuse fibrosis, not only a big localised plaque, but if the specialist says nothing and can't, or doesn't make the effort, to help, i don't see how i can do more (exepting taking pentox and vit e)...

[Tim468]

Antony,

Your points are good ones: how could something change that fast? I don't think that this may apply to you, as it was so rapid. I think lower than average testosterone levels (or function) may be related to Peyronie's (or Peyronies-like) fibrosis in older men. It may also be a problem in younger men getting finasteride (Propecia) for hair loss.

Testosterone levels go down gradually as you age. Sometimes they drop too fast or too soon - mine did. I very much wonder if some of the "increase" in Peyronie's is related to older men now believing that they have a right to an erection. The use of Viagra has really changed things for men IMHO. Older men may have previously suffered in silence - now they are speaking up. So, the connection between Peyronie's Disease and aging (already known) and Testosterone levels will perhaps be understood better.

Instead, Antony, your problem came on so fast, it sounds more like the overwhelming fibrosis that develops after getting priapism. In that condition, there is damage done to the penile structures that leads to progressive fibrosis. That is the problem that was treated effectively with Viagra, Pentox and Arginine by Tom Lue in a case report of two men.

In that case, there was  a discreet wound that happened, followed by a wound healing process gone awry. In your case, there seems to be an on-going wound process that has not "happened", but is "happening". That may imply that there is more to come, and that therapy geared towards helping recover will be ineffective until the process has moved into the resolution phase.

It is very frustrating that the cause of your problem remains unknown, for you cannot know when it is over, or if there is anything to do to stop that process from getting worse. Obviously, if it goes very far, it will be harder to recover from no matter what you do. That is really scary for you I bet, and my heart goes out to you.

If it is helpful to recall this, remember that A) it should stop getting worse soon enough, B) anti-fibrotic therapy may help you recover, C) surgery may provide you with a way to have a satisfying and happy lovelife and sex life, D) progress in reconstructive surgery, including fashioning of new penile tissue to replace damaged tissue is on the way. It may not be this year, but during your lifem and during your active sex life, such progress will happen such that YOU can benefit from it. So, never say 'die' - there is always hope.

To Pal-31

MY best advice is to get a level measured and to discuss it with your doctor.

Tim

[antony]

Tim,

thanks for answer, i bet you -sadly for me- said about all what i exactly think, and pointed why it's so hard and scary...

The fact that the cause is not PRECISELY found is horrible, but there is no doubt, acording at least to 2 different doctors, that it's due to micro fibrosis. Anyway, there are not 1000 causes of organical impotence, especially in that way and with other symptoms like mines.
But hearing from other 'famous specialists' that 'there is nothing",or 'it's in your head' when you have such symptoms make me both agressive and desesperate. I know that exactly the same answers were told by f**** arogant 'specialists' to other persons with about same symptomes, both in france or in the usa.

At the moment i take pentox, vit E, and sometimes cialis, that makes few effect now. I could try the combination with l-arginine and viagra too as you say, why not? Yes, my condition sounds exactly like a person who would had got priapism. It's exactly that: the penile structures have changed, and i can feel it (but how the specialist dared telling 'its normal'?). The mystery stays how a wrong move of the girl during intercourse, with a pain but not external and visible trauma or haematoma, could have lead to such bad ED  and change of inside structures, when some people with big plaque of Peyronie can still erect (with curvature, but the erectile processus is not damaged) ; and me with no visible plaque it's totally dead.

Did the 2 men treated by Tom Lue (american doctor?) you speak to me were healed? do you know if they recovered 'normal' penis (size, and erection)? Anyway, i don't know if taking viagra during a long time and every day at my age is good...Coz i read that after priapism, ED was DEFINITIVE and appart from penile prostesis (that i don't want to hear about), there was nothing to do (and sure it's scary).

Concerning the discreet wound, and healing process that gone awry , that's exactly what i feel (and what hapened i bet, i just don't understand why we speak about the possibilities  on a forum, and that the doctors specialised don't discuss, don't tell 'inteligent' opinions or advices, even don't listen to you, when you pay them for helping you...). I don't know if the healing process that went in bad way is finished or 'on going' as you say, it's about 9 months that it hapened, i would say it is finished now, more than 'on going' (but i don't know really in fact). But when i see what i have now, i don't see how i could have more to come...

For your A), yes, maybe it has stopped yet , or maybe soon  B) it's my biggest hope, that pentox, vit E, and so maybe l arginine and viagra or cialis could help me, if you know other things that you have heard in the usa, i take everything you know. But when i see the form of my penis and what i feel inside, and the crap erection even with big dose of cialis, i have some big doubts C) If surgery is put penile prostesis, i cannot , physicaly and psychologically; that implies that i will NEVER have a natural erection again for the REST OF LIFE, coz it's a surgery that destroys the 'safe tissues' you still have.... And its a definitive one. I don't take this option as for me. D) I would give a good chance on this one, hope it won't be available in 10years but before... Do you know where i could write to be informed?? coz in france they don't speak about that, i just found informations about antony atalla, and a guy from forum told me about gene therapy, but i'd like to expose my case and directly ask some information (why not participate to a 'testing protocole' if possible).

Anyway, thanks for answers, i learn more here, or with my generalist doctor (who takes time to listen and try to think) than with F^@$!ng specialists at 150 euros to pay for 5 minutes of useless consultation.

Antony

[jackp]

antony
When the Peronies attacks the corpora and scar tissue starts you start to loose size. Have you lost any size (shrinkage)? If so the only way to stop it is with an implant.
The research I've seen on gene therapy is at least 10 years away if then. Can you wait that long? I can not I'm 65 and need the best available now with almost 100% impotent.
Scary? YES, but what is the alternative at this point?
Jackp

[antony]

To jack:

Yes i have lost lots of size (3 centimeters , i dont know to what it correspond in us, but it's a big loss).

The thing is, i don't have a typical peyronie, and i don't have a located and precise plaque. But penile anatomy changed, and i'm 100% impotent now.

You say 'the only way to stop it is an implant', but now it's too late to stop, i mean by that, that i can't lose anymore i think, it's already done, and it is now stable. But it's impressive how penis (i had a really good size before that problem) shrunk...

I totaly understand in your case that you would take the implant as a serious option. You're 65 , and you can't wait 10years. As for me, i'm 26 and i can't put so young a definitive surgery like a prostesis. If it's to never have again the feeling to be 'normal', during the 60years i have still to live, i prefer giving up now. It means never have a natural erection, natural feeling again.
I supose you have a wife, with a 'common past', that you will speak with her, and she will support you. I would probably consider it seriously in your situation, but mine is diferent. And i think in the same way i understand you take it as an option, you can understand that it can't be one for me. But i admit i dont see alternative.

Maybe re- engenering tissues will be in 10years (and my answer is : no, i cant wait 10years, i see that after 9 months, i am out of force, i've lost my life, so in 10years in this condition, i won't be there anymore), but i was told gene therapy would be available not so far, is that right? Tests have already been done on several men.

Antony

[nemo]

Antony, don't be so drastic in your rejection of an implant.  Eveything I've read says they are very natural looking, and allow you to enjoy sex and ejaculate just like normal.  Imagine how many women have breast implants.  It's not all that different if you think about it.  Frankly, having a penis that responds on demand and stays up as long as you want it has it's merits.  

Of course, you're right, it's a last resort as it's not reversible, but dang, it's a pretty great last resort as it addresses Peyronie's, ED, and everything.  

I'm just saying, look into it before you totally rule it out.  We're lucky to be living in a time when we have this option.

Good luck brother,
Nemo

[Old Man]

Hey Guys:

My advice to all of you who haves posted on this thread in the past few days is this: Look very hard at all options before you leap into something that you can't reverse later. I am 78 plus years old, have had Peyronies Disease and/or ED since the age of 24. I know first hand from my experiences that panic can set in early in life since my Peyronies Disease struck at an early age too. For a good portion of the past 50 plus years, I have experienced Peyronies Disease that came and went several times. Now, after a radical prostatectomy in 1995, I find myself totally impotent for a natural erection.

My erection problem has been taken care of by means of the VED. The VED can and will give you one the best erection you ever had by using it in moderation and careful pumping, etc. It does take getting used to "pumping up" before sex each time, but if you include your partner/wife in the process, it can be fun just like ordinary foreplay. It does not preclude any other means of ED correction, but can add to the use of the ED pills and other ideas.

I know several guys who have had an implant done and they are enjoying it very much. However, they exhausted all other means before having the surgery. All of them are older and at least one is in his 80s still having great sex with his implant. So, it is an option to consider if one has not other alternative.

So, I guess what I am saying is, don't give up trying any and all means of therapy/treatment so soon before jumping into an implant. Look at the positive side of it and try one thing at a time until you find something that helps. My background in this mess has given me insight as to what devastation it can produce in one so young in life. Keep the faith and keep looking for answers.

Regards to all, Old Man

[Tim468]

An implant is not for anyone who does not want it. If he feels strongly about it now, he may change his mind if he goes for ten years without an erection. It takes time to accept what is. I would of course (as would anyone) worry that I was crossing a bridge I could never come back across the other way. That means if Dr Atala develops a laboratory-grown penis that works perfectly well within 15 years, someone with an implant might not be able to get it done.

For now, I would work on getting arginine (as Vasoflow), pentox and viagra on a daily basis.

Also, I miswrote: it was Rajfer and Gonzalez-Cadavid who wrote the case report. Here is the anstract:

authors  Rajfer J., Gore JL., Kaufman J., Gonzalez-Cadavid N.

Department of Urology, David Geffen School of Medicine, University of California, Los Angeles, Los Angeles, CA 90095-1738, USA.

Case report: Avoidance of palpable corporal fibrosis due to priapism with upregulators of nitric oxide.

Journal of Sexual Medicine. 3(1):173-6, 2006 Jan.

INTRODUCTION: Recent evidence suggests that blocking inducible nitric oxide (NO) synthase in the penis may exacerbate fibrotic processes and that application of medications known to increase NO in tissues may prevent fibrosis.
AIM: To report the use of an antifibrotic regimen consisting of medications known to upregulate NO production in two patients with refractory priapism.
METHODS: Two patients presented with priapism of greater than 48-hour duration. After corporal aspiration/irrigation and shunting procedures failed, both were prescribed a daily antifibrotic regimen comprising the phosphodiesterase inhibitors pentoxifylline and sildenafil, and the NO precursor, L-arginine.
RESULTS: At 1 year, both patients were found to have supple corpora without evidence of corporal fibrosis.
CONCLUSIONS: An antifibrotic regimen consisting of upregulators of NO production may ameliorate the corporal fibrosis associated with recalcitrant priapism.

Tim