Open Questions on Peyronies Disease (That won't fit under any of our current topics)

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j

Leftie, give serious consideration to the idea that maybe 40 degrees is not in itself that big of a deal, or even terribly unusual.  I've had a bend to the left for a long time, probably since my 20s. In those days I just accepted it, not having any real point of reference or comparison. And it worked fine. I might have been initially a bit self-conscious about it but that tended to get forgotten pretty quick.

Today with the internet we're subjected to a toxic amount of information on everything under the sun. We can instantly compare ourselves to the rest of humanity along every possible axis, jump immediately on any real or imaginary health concern, and just generally drive ourselves nuts by knowing more than we ever needed to know.

Much later in life I developed Peyronies Disease which has given me a more serious upward bend. But that's another story.

I share the reservations of the previous posters about surgery. I've had 2 surgeries for Dupuytren's and today, I can express my position in 2 words: never again.  Surgeons sell surgery, and they often oversell.


leftie

Thanks for the input guys it is warmly appreciated.

@ Hawk

Thank you for the warm welcome. I have lurked a bit on the forum you recommended, and my first impression is that it is mostly centered around enlargement rather than "un-bending" (in lack of a better word). I will however try and post on the forum to find out if anyone have experienced un-bending as a positive side effect of the enlargement method. I don't have a problem with size, and is really only interested in anti-curvation :-) True, I'll have to sort through the information - I'm beyond the days of: "well it said so on some webpage on the internet, so it must be true".

Yes, I think I will adopt your principle about only being operated on by the very best, should I decide to go through with another operation. I figure it is going to require some heavy research to find out who the very best are in Denmark, where I happen to be located.

@ Old Man

You must really have some experience with this subject, having dealt with it for so many years. How has it been emotionally to live with this problem for so many years? It feels great to get advice from someone with that kind of experience.

I have had trouble finding a more formal search query, than just "curved penis" - and you recommendation of searching on "congenital curvature" turned up a lot of sites I hadn't seen before. So thank you very much! As far as I can see that is what I have. As a side-note most of these sites actually recommend an operation as the solution to the problem. I would really wish I'd stumble across more material that said "do this easy thing for 3 months and your problem is gone!".

I can't recognize many of the chordee symtoms though (http://en.wikipedia.org/wiki/Chordee).

@ J

Believe me I have tried to convince myself, that it is not a problem - so far I've had little or no luck with that. I am unfortunately very self-concious about it and it has affected my sex and dating life all my life. I am a big believer in the human's ability to change our life's quality alone by changing the way we think. And I've had great successes in other areas of my life with this approach or life philosophy if you will. But this thing seems to be a demon that is not so easily killed.

I am also very sceptic about surgery (a side-effect of experiencing a non-successful operation). In Denmark we are so priviliged that we don't have to pay for this kind of surgery, only if we want to choose the doctor ourselves. But if I choose this option I will follow Hawk's advice, and find the best even if it is going to cost me.

leftie

Just a little correction. I posted the following:

"..my first impression is that it is mostly centered around enlargement rather than 'un-bending' ".

I was a little fast there, actually the site has lots of forum threads about curvature.

Old Man

leftie:

Thanks for the vote of condidence. Yes, I have dealt with Peyronies Disease since the age of 24. It has taken quite a bit of blood, sweat and sometimes tears to cope with it. It was the worst mentally at age 24 when it had the most severe bend/curve and pain. It was and still is to some degree emotionally hard to deal with successfully. My complete history is posted elsewhere on the forum.

Have one item that I disagree with you on though. This forum is not just centered around penile enlargement. Its main focus is attempting to help others with this crazy mess called Peyronies Disease. If enlargement comes as a result of the things that are tried, then that would be a bonus. No offense taken with your comments, just wanted to put my two cents in about the real reason for our existence.

You might want to do a search engine for Peyronies Disease or Peyronies Disorder, Duputren's Contractures as well as the curved or bent penis sites. The Peyronies Disease and DC sites are intermingled with links to other sites that have good info that is very helpful.

My final two cents back up Hawk by stating that surgery in most cases should be the last resort. All other options must be persued first, then get a second opinion about surgery. In addition, penile implants have their place in the treatment of Peyronies Disease, but they also should be considered as the last resort. This surgery cannot be reversed as some others can, so choose wisely about any surgery.

I do volunteer counseling work about prostate cancer and Peyronies Disease in my home town with the American Cancer Society, so I see a lot of guys with ED, DC and Peyronies Disease problems.

Best to you, Old Man

Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

leftie

Hello again people,

I need your help with a little more clarification. After I had surgery to try and fix my congenital curvature I realize now that I've actually developed some scar material on the right side of my shaft. The scaring is the exact place where the surgeon opened my penis and shortened my right chamber. I don't feel any pain or discomfort with the scaring, and it also has a soft texture. And I didn't have this scaring before the operation, so my questions are now:

1) Would this scaring be considered Peyronies Disease?

2) Since I didn't have this scaring before the operation wouldn't you agree, that it most likely has no effect on my curve?

3) If I've understood it correctly, the curvature when you have Peyronies Disease is caused by scaring on the inner side of the shaft - ie. on the left side in my case. But my scaring is on the right side. What do you make of that?

Thanks again for all your help

Leftie

Joshua

Is the scar on the outside of the skin, a keloid type scar? If that is the case that would not be Peyronies Disease.

Joshua  

Tim468

As I understand it, you had a (congenital) curve to the left, and a plication on the right side to take a tuck in the tissue, and to thus pull the penis straight. If that is the case, then the surgical incision would have been on the right side, and the scar that you are telling us about is the residual markings of the incision, but should not be contributing to the curvature to the left. It is impossible to make an incision without leaving a scar, but this scar should not lead to problems, unless it *contracts* (ie shrinks down such that the penis cannot fully straighten out). That would be unusual for a scar on the skin (which is not the rate limiting part of erections). A keloid is simply a scar that contracts and heaps up with a spreading quality that is a form of abnormal wound healing.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

leftie

I just checked the wikipedia definition of keloid, and it doesn't look like that - it isn't on the outside. I have a normal 2-3 cm (just a vertical line) scar that shows where the penis was opened. But under that normal scar, I have some sort of lump (which is under the skin) - this is not a line but more of an oval shape that makes sort of a bump out on the penis. It is hard to tell whether it shrinks or contracts anything. The bump is not discolored in anyway it is the same color as the rest of the shaft.

youngpain21

I haven't posted in awhile but I am having a rough time. I am 22 years old and have Peyronies Disease. I first noticed it about 6 months ago. Just tonight I can feel another plaque starting on the left side of my shaft. It is definitely painful and it is really getting me emotionally just as much as physically. I have gone to Chicago to see Dr. Levine, who put me on Pentox and Cialis every other night to increase blood flow. My question is, other men with this disease, do you notice the penis being extremely flexible and able to bend in any way just past the plaques? I have several plaques in the midline of the shaft, and past that point I have a difficult time getting as hard an erection, and the penis seems to have a hinging effect. I have not had intercourse since this started, but I am scared to try it because of the hinging, I believe it will be very difficult. Dr. Levine seemed to think my Peyronies Disease was not in a terrible state, but I don't want to have no sex life all through my life, and I'm only 22 years old now. I can be stimulated, its not quite as easy as before, but its not too bad, but my biggest problem is the hinging and the fact that I believe this will make sex extremely difficult. Do you guys have similar problems? Thanks for any input.  

Joshua

I had a similar plaque build-up and and hinge effect and it did reverse. So hang in there and continue on with treatments. Are you utilising any alternative treatments as well?

Tim468

At your age, the difficulty getting an erection MAY be emotionally caused as much as physically. Not to blame you - I went through the same thing. I did not have a hinge effect, but I have found over the years that if I get hard, I can stay hard enough for intercourse. If that is truly not possible, the a reevaluation of blood flow is indicated, it seems to me.

You are young. More than one of us have had this for many years (I got it at your age and am now 51), and have been able to have a good sex life despite Peyronies Disease. Hang in there. Get going on therapy and do not imagine for one moment that this is how it will be forever.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

ComeBacKid

youngpain21,

I'm 22 and have peyronies to, my penis is really shrinking.  I didnt know cialis and pentox increase bloodflow, perhaps Tim can comment on what these drugs actually do?  Cialis is like an ED treatment, but my phsyciatrist says you still need to stimulate yourself to get an erection, just taking like viagra won't just give you erections.  What is pentox and what can that do?

ComeBackid

youngpain21

ComeBackid,

I was told by my urologist that the Cialis is to increase night time erections and keep the blood moving, which in theory may prevent or slow plaque growth ( I still have plaques growing). The pentox increases the flow of blood through the body and increase tissue oxygen levels. I am planning to attempt to get an ionto set when i go back to the dr at the end of june.



Quote from: pudder135 on May 19, 2006, 11:02:44 PM
youngpain21,

I'm 22 and have peyronies to, my penis is really shrinking.  I didnt know cialis and pentox increase bloodflow, perhaps Tim can comment on what these drugs actually do?  Cialis is like an ED treatment, but my phsyciatrist says you still need to stimulate yourself to get an erection, just taking like viagra won't just give you erections.  What is pentox and what can that do?

ComeBackid

ComeBacKid

Has anyone here besides mark501 tried magneisum sulfate?  If I remember correctly in the Fitch study they claimed some results were shown with that and discounted them however, Mark has said he thinks hes seen results with magnesium sulfate, perhaps preventing the disease from progression more than anything else.  Is there any literature on this or has anyone tried this topical cream and had success?

ComeBackid

899orange

What happened to the area of this site specializing in theory about cause of the disease? i was starting to read the last couple years.

 Anyway, does any one know anything about the Canadian treatment with ultra-sound? The website below talks about flying into toronto for a long weekend and 6 treatments[ the same procedure which they use to break up kidney stones.]

htttp://www.painfree-eswt.com/

 I know that a little knowledge is a dangerous thing, and making efforts to treat myself may be futile, but  I am curious about the injury versus something wrong in your body in general [ not well expressed I know.] The doctors aren't getting anywhere. I have been able to improve  health problems in the past by eliminating problem foods for example.

Hawk

Orange,

Welcome to the forum and a special thanks for contributing to the forum by posting questions and comments.

We have a topic called "Causes of Peyronies Disease" but this forum is just reaching its first anniversary so when you mention "years" I am a bit confused

Click on our link for more info on shock wave therapy https://www.peyroniesforum.net/index.php/topic,27.0.html

Thanks again for being a contributor.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

ComeBacKid

Orange,

Welcome to the forum, I hope you become a solid contributor here.

I expressed interest in that treatment earlier, I don't know of anyone on this forum who has had it done.  Yes it looks like you go to Toronto, and you get treatments over the course of a weekend, and a monday or tuesday.  The rumor is that it is good for calcified or harder plaques.  Seems funny the only place you can get it done is in Canada.  Perhaps you could do more research on it for now and post a report of what you've found out about it, its one of the areas that hasn't been talked about much or researched, or tried, the hot thing right now seems to be the VED's and a few of us are doing IONO treatments.

What treatments have you tried so far?

Several people have reported the Acetyl L Cartinine in stopping pain, and I believe it could help even more than this, the stuff is cheap and you can get it at Wal Mart - I take about 2 grams of the stuff per day and 800 IU's of vitamin E as well.

Scroll down the list of topics and youll find the ESWT topic that you can look under I think my post was the last one on there with no response.

Also if you get the chance click on the meet our members and our histories section and fill out your story about how you got Peyronies Disease etc.

ComeBackid

kevin

I haven't priced Acetyl L Cartinine at Wal-Mart but I haven't found it to be cheap anywhere (in the high dosages we are looking for) unless you buy it in powder form as I do.  It adds a very sour taste to the beverage you mix it with, especially if it's plain water, but it sure saves money:  $8 for 100 grams, i.e., 1000 milligrams  X 100 doses, and it costs even less if multiple bags are ordered.

(Naturally, I will not publicize any vendor in a forum posting. However any individual who has searched and still not found a similarly cheap source of ALC, can always send me a private message; I'll then point you to where I buy mine.)

Hawk

Kevin,

I respect your personal decision not to mention a vendors name if you have some reason to set that guideline for yourself.  I just want to make it clear that the forum has no such rule.  I appreciate members shoping concern for our forum and being cautious of doing anything to disrupt it for themselves or others.  In the past we have had forums where impostors and shills abound or forums where you dare not breathe a word about a commercial enterprise or product.  Neither is not the case here.

I personally am not afraid of even an admitted company rep. posting here,and infact invite them to do so. They must refrain from spamming the forum and realize they may get direct questions, and skeptical but respectful remarks fired at them.  If we eliminate all that make a living from Peyronies Disease, we would have to tell urologists to stay away.

The threat to our forum is not vendors.  Direct questions addressing facts, studies, and evidence protect us from any threat.  Our two biggest dangers (in order) are; a lack of information, and shills that represent a company and pretend to be a satisfied customer.  Many members or guests cannot or will not PM a member for further information.

I personally have yet to find any vendor to beat Puritan Pride at www.puritan.com, especially when they have their better sales (they advertise inflated prices and ALWAYS have some sale running).  If anyone finds a quality vendor at a cheaper price, I want to know.  

If there are and questions or comments on this I hope they will be discussed because i think it is an important subject.


Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

kevin

Like you, I have found that Puritan has some of the better prices out there in general (though they don't carry ALC as powder).  I've bought supplements from them in the past but currently Vitacost is the same or even cheaper, and that's without the need for any "Buy-two-and get-three-free"-type specials (and the headaches they cause when you try to calculate if the deal is good.)

FYI: Puritan, Nature's Bounty, Sundown, and the Vitamin World stores are all the same company now.  There may even be other companies in that group - those are just the ones I know about.  I've read that there are only about three "original" supplement manufacturers in the world and almost all the the retail brands (well-known names or not) are supplied by them.  We need to remember that fact before paying a lot extra for supposedly superior products.

howcanthisbe

Hey im new here. Im 22 years old and think I might have Peyronies Disease. It all started when I took a stupid blood pressure drug called Ziac which is a mix between a low dose of beta blockers and duretics. I now know beta blockers can cause the condition. It turned out the blood pressure cuff they were using on my arm was too small for my arm which was making false high readings. Anyways so like a idiot I trusted the doctor and took the med that he claimed the only side effect was " some slight dizziness and frequent urination". Not only may it have cause my Peyronies Disease but also is causing my hair to fall out and increased body hair growth. I took the drug for almost two years, it was around the 16 month mark while on the drug that I noticed one night at a party I met this girl and we got into it and my erection was only like half full, she just zipped up my pants after that and kinda laughed and left 5 mins later. The next day I didnt think much of it because I had like 24-28 beers worth that night and know it can cause some erection problems. I started thinking though yea thats true but I drink that all the time and have hard erections still so somethings up. I quit the med and have been off it for almost 2 years now. What I have now are erections that dont get as hard as they use to but still are pretty hard and fine for sex. I do have a slight upwards curve and a small indent in the left side of penis. Now I know I have had the curve for at least 6 months, im not sure if Ive always had a curve or not though. I just recently thought its a realisitic possibilty that I may have Peyronies Disease, since then I have been closly examining my penis and thats when I noticed the little "dent". Im not sure if that has been there forever or what, its frustrating as I wish I could go back in time and check these things out,lol. When my penis is flacid it looks normal. Now recently I found something that is very concerning, I have this thin veinlike thing that runs up my penis from the middle of the base to about mid portion of penis. It looks like a vein, it even has a bluish tent sometimes, but this vein feels hard kinda. I have heard of "tendons" in Peyronies Disease, could this be it? I asked a friend and he said he had a hard vein like thing on his penis and said its normal, but im not sure. Its hard to find it, but I can see it when im erect. The head of my penis doesnt get tottally hard now, in fact thats my main erection problem. Only about half the head gets hard, besides that my erections are really fine. To make matters worst the blood pressure med has greatly lowered my libido, I dont know if this will ever come back or what. So in other words I dont get as many erections now because I dont get turned on really when I see a hot girl in the mall etc. Im thinking this is one of my main problems, my libido is low and im not getting a erection everyhour like I did before pre meds. I need to get a girlfriend so I can get erections throughout the day. I do notice when I talk to hot girls I get a pretty good erection sometimes, I think alot of it is my nerves as I try to get erections when I see hot girls now. Anyways if my condition was to stay as it is right now I could live a perfectly normal sex life as I dont even think any girl would notice the slight bend as its normal with alot of guys and my erections are pretty much rock hard. I am concerned that the dent area is getting bigger maybe and the curve is growing slowly. Im only 22 and if my dick gets worse I dont know what im going to do, everything is finally going good in my life and now im going bald and my dick is messing up all because of that stupid damn pill I took, its amazing really. I use to have extremely thick hair ( its still kinda thick) but its falling out rapidly and my temples are receding. Anyways I have learned some great things from this expereince, first off dont take most meds as they are toxic and almost all have a natural alternative that is as effective. I dont think I would have ever learned that without seeing this harmful side effects and digging up the dirt on the meds. I just wish I didnt have to learn the hard way by losing my hair and penis. Im taking 400 IU of E and the first 3 days I took it my erections were a good bit harder, but its been 7 days now and it seems things are back to normal. So could it be I just have a mild form of Peyronies Disease and it could go away or could stay the same? Im only 22, I just think I can heal eventually or something espically if I get alot of erections everyday. I also wanted to note that I dont get near as many morning erections as I did pre meds. Anyways if anyone can shed some light on my situation I would greatly appreciate it. Thanks

ComeBacKid

howcanthisbe,

Yes it does sound like you have mild peyronies, the incomplete or not full erections are a side effect of the peyronies which is what I have as well.  

I got it at age 15 from getting hit in the penis with a soccer ball. I'm now 22 like you. However about a year and a half ago I may have made my disease worse by taking lexapro an anti depressant that stopped giving me erections throughtout the day, decreased my libido and bloodflow.  The effects of all these drugs and ones like you took are still in question, its best to stop taking the drug and move on, dont dwell on what you can't change.

What can you do about your condition now?  Stay educated and this forum is an excellent way for you to do this, and except the fact that your penis is different now.

Rather than focus on why you got it which you can't do now focus on what you can do to help your condition.

Your vitamin E is a good start, heres what I take:

800 IU's of vitamin E daily -from soy
2 grams of Acetyl L Carnitine- Taking pills in the morning and night both after food
I'm currently using TV from PDLabs with no visible results, I'd wait to see the results of our study before you decide on buying that expensive product

I plan to start IONOtophoresis treatments again soon and do it everyday.
I purchased a VEd which I will use with it just to give myself an erection once or twice a day, this helps keep the erectile tissue healthy and may help stretch out the plaque slowly over time.  These things must be used with extreme caution you don't go in and pump up your dick really big, if this is something you want to pursue I'd recomend talking to OLD Man.

There are many different other treatments out there so look around the forum and see what you think.  We have a great group of guys who are always willing to answer your questions and help guide you through this disease.

One pharmaceutical company is currently developing a new form of injections, and the stretching devices seem to be popular as of lately.

Weclome to the forum and don't hesitate to ask questions or make posts.

ComeBackid

howcanthisbe

thanks for the reply. So you have had it since 15? Has it gotton any better at all? I still get full erections, only when im drunk is when my erection is half full or not as hard but still erect. When im not drunk I get plenty hard for intercourse, just not as hard as say a broomstick, but almost that hard. The head doesnt get hard really though, I noticed today when I was doing jumping jacks I got pain on the left side of my penis, almost where the indention is. I dont know why but the jump and spread legs motion makes that pain yet if I jump up and down fast and hard I dont get the pain. Man I hope this goes away eventually or stays the same, as I said right now im fine sexually.

Leopold

Do I have Peyronies Disease? I am 31 years old. Last week I developed a hardness several inches long and about a half an inch wide on the left side of my penis. It is always painful, and even more so when I have an erection. I get woken up several times through the night because of erections in my sleep and the pain. I haven't tried to achieve a full erection while awake because the pain is unbearable. Sex would be impossible right now because of this pain.  I notice on a partial erection the penis is bending towards the left side. The right side of my penis is normal it seems to be just the left side that has a problem. Like I said above this condition appeared suddenly and has not improved. I don't recall any injuries that might have caused this. I haven't had sex in about 2 months, so it was not a sexual injury either.  

ComeBacKid

Leopold,

Yes it sounds like you have peyronies, its in the early inflammatory stages which you can tell by the pain.

Acetyl L Carnitine 2 grams daily is good and I'd go with 800 IU's of vitamin E.

I would also try IONOtophoresis with the use of verapamil as that usually works better in earlier phases.  In my opinion waiting is dumb and lets the scar tissue harden and become even more irreversible.

ComeBackid

ComeBacKid

Howcanthisbe,

No it never got better on its own.  Right after injury the plaque stabilized and I had a less full erection but only slight loss of size in the flaccid state.  It seems like over time I've lost size very slowly, however in April I noticed a huge loss in size in both the flaccid and erect states.  This may have been due to me being on the anti depressant lexapro for a year or so , which kills your libido, spontaneous erections, and may have effected the bloodflow making the peyronies disease worse, I will never know if that was the cause or if it was natural progression.

In most cases it doesnt go away and I wouldn't recomend doing nothing, since your still in the early stages you have a better chance of getting rid of or dissolving the scar tissue, in my opinion and experience, the longer you wait the harder the scar tissue becomes and more it contracts.

I'd go with Acetyl L Carnitine 2 grams daily and 800 IU's of vitamin E daily just to get started, and if I were you I'd go with the IONOtophoresis treatments which are shown to get verapamil into the targeted tissue.

ComeBackid

ComeBackid

howcanthisbe

but L argintine? Is that safe? Im taking 400 IU of E. I dont want to take higher doses in case my blood pressure is high. So what should I take? The dent in my penis is like a inch long around the side, will this eventually turn into a ring around the penis? Man this sucks, I dont wanna take anything thats not safe, is all that you mention safe? Thanks

ComeBacKid

Howcanthisbe,

I didn't know you have high blood pressure, in this case you really need to consult a urologist, I would not recomend taking the vitamin E or Acetyl L Carnitine until you check with a urologist.

ComeBackid

wantitstr8

Leopold-

Before you begin any treatment, go to a Urologist (preferably an expert in Peyronies Disease or ED) and get an evaluation of your condition.  You can find referrals through a variety of websites.  Depending on where you are you can usually find someone within a couple hours drive.  You need to get your condition diagnosed, primarily to rule out other more complicated conditions before you begin a regimen of treatment.  Please note, you are not talking to Urologists here, I would take ANY medical advice, diagnosis, or treatment recommendations with a very large grain of salt.  

As for the guys on this board, I know I'm new here, but I think we should all avoid providing diagnoses, treatment plans, etc.  especially to guys who are new to the board and have not been evaluated by a physician.  I think it's fine to discuss potential treatments, personal regimens, or other issues surrounding this condition, however, to prescribe a treatment regimen to a new member, who has yet to be evaluated by a physician, is a little irresponsible.

howcanthisbe

what if these treatments cause Peyronies Disease? Like vitiman E, since i started taking it I have a slight ache on left side of my penis. Could E cause Peyronies Disease?

wantitstr8

Howcanthisbe-

It is highly unlikely that Vitamin E causes Peyronies Disease.  All the medical evidence indicates either trauma or some other "unknown" cause.  Most likely, the other cause will be a dysfunction in the production or utilization of enzymes in the body...the inability to break down collagen and the accumulation of fibrous tissue.  I have Peyronies Disease...had it for about 8 months now...I also suffer from plantar fibromatosis.  Two faces of the same coin.  It sucks, but go see a Urologist, and get active in your own care.  This condition can be treated but you need to educate yourself, work with your physician, and be diligent in developing and utilizing a course of therapy.  Don't let this crap ruin your life.  It may not be curable, but it isn't a death sentence either.  Get to a good doctor...

ComeBacKid

Howcanthisbe,

You've asked me if I think you have peyronies, I've provided you with my answers, but wantitstr8 is right you should see a urologist, the problem is most know nothing about peyronies, I found this out myself after visiting many in my area.  Some of the experts may require travel time or charge through the roof for a visit.  In the end you can find effective treatments here.  Assuming your perfectly healthy I'd recomend to a newcomer 800 IU's of vitamin E, and 2 grams of Acetyl L Cartinine daily, I'd also try out the IONO treatments with verapamil if I were you.  The IONO treatments are harmless as is the ACL, you said you have high blood pressure so you might want to check with a doctor or physician about taking high amounts of vitamin E if you already have high blood pressure.  In the end you have to research your condition and read through these boards but we are all here to help.  Anything you try is obviously at your own risk and you can take or not take my advice.  To be honest the only thing I think you have to gain from seeing a urologist is getting a penile ultra sound to track the plaque, and most won't even do this, I tried to get mine to and he rejected the idea, and as I said the experts can cost hundreds of dollars for an office visit.

ComeBackid

Tim468

Howcanthisbe:

You need to see a physician. Also, some of the things that you said suggest that there might be other reasons for ED, including alcohol intake (you describe a level of intake that is likely to lead to ED).

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

howcanthisbe

Does anyone think frequent erections is a big part of recovery? Today I got around 8 erections at work. Pretty good ones too, defienatly good enough for sex. Now of course during these erections they are ruined by my constant examination of the small dent and upward curve,lol. I notice when I get erect I can see the small dent but when I get really erect it goes away but the curve gets a little more upwards when im fully erect. I think good bloodflow to the penis is critical to recover, I noticed the last 2 nights I have woken up with good erections..... hopefully the vitiman E is doing something. It seems my head is starting to get bigger and more firm when I get really erect lately, so thats good news. I just think the reason I might have Peyronies Disease is because of the meds which lowered my libido and I didnt get no day time erections ever hardly. I think the lack of blood flow caused this. When im erect the only thing I can find that could be plaque is this vein looking thing running up the middle thats kinda hard unlike the other veins which are puffy and soft. Im scared this is the plaque. Anyways do you guys that frequent erections are needed for recovery? If I could find a girlfriend and be with her alot I could get alot of erections as I tend to get more when I talk to hot girls lately rather then looking at them for some reason. Yea I know my libido is still messed up from the meds, it really sucks but seems to be improving since I started taking Vit. E 400 IU. Anyways I dont mind the curve, in fact I think alot of girls will like the curve as its not a sharp curve at all, its a good bit less then the shape of a bananna. Its the dent that scares me as if it could start to grow, thats why im going to make sure I get at least like 6 erections a day and keep taking vit. E. Can anyone give me any insight on this? Thanks

Liam

Quotethats why im going to make sure I get at least like 6 erections a day and keep taking vit. E. Can anyone give me any insight on this? Thanks


                                         I wish
"I don't ask why patients lie, I just assume they all do."
House

wantitstr8

6 boners a day and a regimen of viyamin E is not going to fix your condition.  Go see a Doctor, get a professional evaluation, and decide on a therapy (if you need one).  Nobody on this board can give you any valid insight into your condition until you have a medical diagnosis of what your condition is.  We all know it is embarrassing, distressing, and difficult to discuss this condition with anyone, but you really need to get evaluated by a professional

ComeBacKid

You should go see your urologist.  However be prepared for them to simply tell you that you have peyronies and tell you to take vitamin E.  This is the diagnosis of most urologists.  Only the top urologists can really offer you a diagnosis with a quality plan of action.  Try to research and locate a urologist who specializes in Peyronies if you can, don't be embarrased just force yourself in.

ComeBackid

howcanthisbe

thanks for the advice guys. I just dont know what to do, ive had it probably since I took the blood pressure meds six years ago and im fine as far as sex goes right now. I just read this info about vitiman E:

"Other research, however, suggests that applying Vitamin E to post surgical scars does not reduce the size, shape, or color of scars and can, in up to one third of patients, result in contact dermatitis, allergic reactions, or other irritation that can worsen a scar's appearance. (Source: Baumann, Dermatologic Surgery, 1999. Also: http://www.fitnessmagazine.com/fitness_and_health/052203_scars.jsp)

I just dont know whether I need to be taking E or not, since ive been taking it I have a slight ach in my left side of penis off and on where the small dent is..... it could be because imtouching the dent like every 10 mins to feel it but I dont know. I just dont wanna take something thats gonna make me worse when im fine right now. I know that sounds crazy but we all know much is not known about Peyronies Disease so whos to say that vitiman E cant aggreviate the plaque and make it grow more etc. Has anyone ever thought about this? Thanks

wantitstr8

Howcanthisbe-

Topical application and oral ingestion of vitamin E are two completely different things.  There is no scientific evidence that taking vitamin E will worsen the plaque in Peyronies Disease.  Unfortunately, there is very little evidence that it is of any benefit either.  If you think vitamin E is worsening your condition, stop taking it and go see a Urologist.  I believe there are treatments that can minimize the damage caused by the plaque (pentox, arginine, in some cases Verapimil injections, VED's, traction devices, etc) but you need to know your status before you can make a good decision.  Some of these treatments have shown promise to halt the progression...trust me, you want to jump on this quickly.  Almost everyone that I have met (online or otherwise) who procrastinated with their treatment eventually regretted not addressing the problem sooner.

With all due respect, you seem to want to debate the efficacy of Vitamin E while your problem continues.  Nobody here can tell you what will make you worse or make you better.  Nobody here can say whether you have Peyronies Disease, Penile cancer, a thrombosed vein, or nothing at all.  Don't make the mistake of delaying treatment.  You can only make a good decision if you have a good fundamental base of information...that invariably starts with a good diagnosis.

Liam

QuoteI know that sounds crazy but we all know much is not known about Peyronies Disease so whos to say that vitiman E cant aggreviate the plaque and make it grow more etc. Has anyone ever thought about this? Thanks

There has been no evidence that I have personally seen.  I have not seen anyone on this board present evidence to that effect.  I have never seen nor heard any clinical evidence of vitamin E having a negative impact on Peyronies Disease.  

The paper you quoted referred to Vitamin E oil applied topically.  All of the problems they state are related to skin irritation.  Compared to oral dosage, it's apples and oranges.

Since it seems to bother you, don't take it (unless your doctor requires).  I've never heard of it helping anyone's Peyronies Disease.  So really, it is no big deal.  There are other supplements, prescriptions, and therapies which have been shown to be more effective.

Please consult your doctor!
"I don't ask why patients lie, I just assume they all do."
House

howcanthisbe

hey thanks everyone. Im sorry to keep asking questions. I have noticed that when taking E my erections seem a bit harder and easier to get plus my libido seems to be going up like it was before I took the blood pressure meds. Its just the slight ache and fact that everyone that takes vit E gets worse so I thought it could be possible vitiman E made things worse. I know its probably not making it worse, I think E is helping me out and all plus im getting more nighttime erections lately. I just am parinoid that I could create the condition when I was ok to begin with. Im gonna try to see a uro soon. Thanks for the kind support everyone, im gonna keep taking E and see what happens for now.  

Leopold

I did a thorough inspection of my penis today in the soft state. The hardness is a huge area of my penis. It is a few inches long and almost wraps around the left side of my penis. A way to describe it is take a rubber hose cut it down the middle and attach it to one side of a pipe. That seems to be what this hardness is doing. From reading this site I see people with marble size hardness or pea size. Shi# I have a huge area of hardness. I just developed this problem last week and it has really messed up my penis. I am so depressed/shocked about this.   :(

Hawk

Leopold,

Welcome to the PDS, and a thanks for contributing by posting comments and questions.  

First, try not to panic.  You will be fine and make it through this.  In some ways your age could work in your favor.  In the immediate future there may be things that may help in addition the things you are doing.  you might consider asking your doctor to prescribe Pentox.  Here is a blip off of the PDS website.

QuotePentoxiphylline  (pentox or Trental) - Pentox has been used in humans in a variety of inflammatory and fibrotic conditions.  The mechanism is not fully understood; pentox blocks the transforming growth factor (TGF) B1- mediated pathway of inflammation, prevents deposition of collagen type 1, and acts as a nonspecific (PDE) inhibitor. pentox's observed suppression of collagen production in Peyronie's cells in tissue culture, as well as its efficacy in other fibrotic disorders, have resulted with it being offered to patients for treatment by a limited number of physicians.  Further studies will soon be completed but initial results seem to indicate that pentox is a useful treatment for Peyronie's disease.

You can't go wrong with an over the counter supplement known as Acetyl L-Carnitine (1000 mg 2 or 3 times per day)

L-Arginine is an amino acid supplement that is often taken at 2000 to 5000 mg per day

There are several other things like ibuprophen, application of mild heat that are low cost and can possibly help along with your urologist does.  Remember that 5 - 15 % of cases improve with no treatment and the pain goes away in virtually all cases within 24 months.

Stay calm, read and educate yourself.  The men and women here are the greatest support you could have by your side.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

SteveW

Quote from: Leopold on June 16, 2006, 04:06:29 PM
Shi# I have a huge area of hardness. I just developed this problem last week and it has really messed up my penis. I am so depressed/shocked about this.

Leopold,
It sounds like you and I have similar conditions.  My Peyronies Disease developed very, very rapidly virtually overnight.  My mass is a single, large plate running the length of my penis on the top side.  It is as wide as my unit at the base and then irregularly tapers to almost a point just behind my glans.  Much like the shape of an arrowhead.  The curve originally was 90 degrees and the wasting impacted the center one third or so, shrinking my girth (circumference) to right at 50%.  The VI may have helped since my curve is now at about a 70% curve and the wasting may be improved by maybe 10%.  I am stretching now.  I will see.

As for you...try not to freak out.  This is difficult, painful, embarrassing and seems to impact every area of our lives.  But your emotions, your feelings and your adjustment to this change will improve greatly as time goes on.
 
20 years of Peyronie's / ED
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

Leopold

Thanks for the replys, I plan on doing everything I can to fight this. I really appreciate havng this forum to read and share experiences.  

SteveW

Quote from: Leopold on June 16, 2006, 08:22:16 PM
Thanks for the replys, I plan on doing everything I can to fight this. I really appreciate havng this forum to read and share experiences.

And please...let us know what you encounter, learn or find that maybe, might just help.
20 years of Peyronie's / ED
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

howcanthisbe

Ok this may sound crazy but since taking Vit. E a week ago my condition has greatly worsened. This might sound crazy and I have no proof of it. I first noticed a small dent, tiny before taking Vit E. Might I add this was when I first thought I had Peyronies Disease so I could have overlooked this small dent easily before I exmined sooo closly looking for dents. Ok this small dent has seemed to grow everyday since taking E. Now all of sudden tonight the small dent went to a big dent, its halfway around my penis and my whole front side of penis just feels kinda collapsed and it was hard to get a erection and even harder to maintain it! I couldnt believe it! Just all of a sudden, im in shock really and dont know what to do. Let me tell you why I think Vit E caused this. First off I first took the meds that caused this condition 4 years ago, I just realized 2 weeks ago my med caused Peyronies Disease then thats when I got worried. So in other words if I wasnt taking E then my dent would have grown right now at this time yet ive been fine for 4 years? Its too much of a cocidence I think. I mean listen to all the stories of people that take Vit E only to get worse, they just think its the natural progression of Peyronies Disease and vit. E cant stop it, but what if E is worsening of making it. Maybe E irrates the scar or the body builds the scar back stronger etc, I dont know how it could work. But im pretty sure if I didnt take E or think I had Peyronies Disease my penis would be fine right now, im stopping E tommorrow and see what happens..... I really hope tonight was a fluke or something.... because its getting scary now.

ComeBacKid

Howcanthisbe

Since most people would agree or argue vitamin E does nothing to help anyway, if you really think its making it worse quit taking it!  Then observe if it continues to worsen or not, I highly doubt the vitamin E is making your condition worse though, but just quit taking it then, there is not one scientific study that proves vitamin E does anything and it did nothing for me.

ComeBackid

Liam

This thread reminds me of a George Carlin bit.  I have to paraphrase.  They found the cause of stomach cancer....... Saliva......... But, only when swallowed in small quantities over a long period of time.



Message......Correlation does not mean cause.
"I don't ask why patients lie, I just assume they all do."
House

howcanthisbe

Thanks ComeBackid, I ddint take it today and when I got a erection it looked alot better then yesterday, but I know it can change from day to day then go back. Anyways I have noticed that if I get a erection and ejaculate and then get a erection right after and ejactculate the dent is gone the after the first ejaculation and my penis looks 100% normal. Kinda weird but ive noticed this several times. Anyways a bit of good news, look what some girls have to say about having a curve:

http://www.hipforums.com/forums/archive/index.php/t-127126.html

I just hope my curve doesnt get too bad, mainly I just dont wanna get ED.