Congenital Curvature or Peyronies Disease

[bentwilly]

Hi Les, thanks for the response. I am actually now pretty sure it is Peyronie's as it seems it was not always like that when I was very young...It definitely got damaged at some point, as much as I rack my brain I can't remember though. It's almost like gonzo's nose! As far as function, it works fine, no problems there. Still get good erections but something is in there causing the curve.

I have been reading and enjoy this forum very much so far, it's quite good in making you feel less alone about your condition.  There is so much information and people to talk and other stories, it's very comprehensive moreso than many Peyronie's sites. I am happy I have an appointment with a urologist, I will definitely post back with what he says. I have hope that the modern medical world can make ol' one eye a bit more straight.

[lwillisjr]

Many of us grew up in the tighty whitey generation. If that were the case we would all have bent or damaged penises. I don't think underwear has anything to do with it.

Based on what you have described, none of us here can determine if you have Peyronies Disease or not. It could be Peyronies Disease and/or it could be congenital.

You are taking the right steps in going to see a urologist and getting a medical opinion. If (and I repeat if..) you are diagnosed with Peyronies Disease then there is a lot of information on this web site to help with different therapies.

[bentwilly]

Hi I'm new here, 21 years old. About to go see a urologist in a week, Peyronie's was listed under the areas they specialize in so I have hope.

I'm going to describe this the best I can...

As long as I can remember I have had a downwards curve to my penis (as long as I can remember being when I was 12-13, but may not have had it before then?) seems to be in the 20-30 degree range as far as angle, and it feels as if the middle-lower left side isn't expanding properly. I can feel what seems to be a small bump, and there are also cord/ring-like bands that aren't on the right bottom side or on the top of my penis. There is also a blue area with a weird looking scar tissue line across it. It seems as if the cord lines pull it down when it starts to get erect.

When fully erect against the curve it is impossible, it gets so rock hard, doesn't remain soft like the upper side. I am wondering if this is Peyronie's, or congenital? I wore tighty-whitey underwear growing up and always had my erections bend down that way, the curve is right where it would be pressed against my testicles. Would having erections in those type underwear cut off the blood circulation and therefore lead to a damaged penis? It seems like it stunted the growth or something. I never recall having injured it, although I might have at some point.

[lwillisjr]

Stealthmeister,

One other thing to add to Old Man's suggestions........

Congenital curves occur at birth, meaning you were born with it and will always have it. Congenital curves are also "generally" gradual, meaning banana shaped.

Peyronies Disease will cause a sudden change in curvature. Meaning your erection may be genreally straight but then at the point of plaque formation you will get a sudden curve. Go to either wikipedia or the Mayo clinic site and search for Peyronies disease. There are some pictures/diagrams that show typically Peyronies curves.

[Old Man]

stealthmeister:

Welcome to one of the best men's health forums for peyronies disease on the Internet. Sorry to hear that you are having problems in the genital area. Congenital curvature usually has presented itself from the age of puberty or sometimes before by showing the various degrees of curve, etc. Peyronies disease curves usually present themselves well on into a guys age, but sometimes in their early years.

Since we are not physicians, we are not allowed to provide diagnoses so what we do it provide helpful information to guys that need it.

So with that said, you did not provide enough information for any of us to be able to give you any helpful suggestions or information. So, please give us more help by stating if this curve has been with you for a long period of time maybe from puberty or if it came on suddenly lately, etc. Also, plaque usually presents itself after the unstable stage of Peyronies Disease and has had time calcify into a plaque. There are many factors of Peyronies Disease, and it is difficulty to know what each case presents since each and every case is different any other. There are, however, some similarities between cases so some present identical items and others not, etc.

Please give the forum another posting outlining as many factors/symptoms you are presented with and go into more detail about each item. Then, perhaps we can help further with some information for you. Also, I strongly urge to seek professional help by selecting a urologist specializing in male sex therapist work and/or Peyronies Disease. Since you say you live in the WA area, Dr. Tom Lue in CA would be a very good doctor to use if you are able to travel to him.

Again, welcome to the forum and sorry you are having problems.

Old Man

[stealthmeister]

Hello all,

I'm new to the forums and I have a few newbie questions so please bear with me.  I have a downward curvature, but I'm not sure if it's congenital or if it's peyronies. 

I'm pretty sure that when flaccid, I do not feel any existence of plague.  So would an induced erection with plague be a tell-tale sign that it's peyronies?  What if there is no plague when fully erect?

So is the lack of plague be 100% confirmation that it's congenital?  If I would go to a uro doctor, what type of tests is at their disposal to confirm if my bend is one or the other. 

Many thanks in advance.

[Old Man]

RedSunn:

OK, the term VED is an acronym for vacuum erection device. It was primarily developed to help with erectile dysfunction, but later it was learned that using it properly can and will help in most cases with Peyronies Disease.

There are tons of posts on the VED board section explaining all about how it is used, what the results may or may no be and other valuable information about it. So, take a good long hard look at this board. It is listed down in the schedule of boards on the home page which comes up when you sign in to the main forum.

After you have searched through these posts and have questions, please feel free to ask any and all. Someone will be able to get an answer for you.

Old Man

[RedSunn]

Do you have any insurance at all?  I only have state insurance for my son, but they have been spectacular at working with us once we worked with their rules, even allowing us to see two specialists out of network and out of state so far.  The big thing is to work with your family doctor to get referrals and testing done.  Sometimes the way that they respond to denials (appeals) and the way they request referrals and tests is EXTREMELY important in how an insurance company responds.  Like fully explaining the problem and what the test would determine and find out for you.  Listing the degree of your problem and how it affects you is important as well, both physically and emotionally.  Once you get any type of referral or test approved, you need to list and use them in any future request so they have that info to go on, sometimes simply knowing that they have approved things for this before can make a difference, especially if you list the reason for the further need of it.  I would DEFINATELY get the dopplar test anyway, 10% seems a large number for error to me, especially when of such a sensitive nature, I know I would do it for my son.  When asking the insurance company, I would have it stated not that the dr is 90% sure of the other diagnosis, but that there is still a 10% chance of another difficulty and the problems that not knowing for sure that would arise from it.  Most of these insurance people have never come across this problem, most of our doctors don't either, they have had to learn just to help with referrals (which I thank them so much for).  So when asking your insurance company for a test or referral, educating them on the reasons, problems, possible help or hinderances with or without the testing is extremely important, especially if you want to see a certain doctor.  There are reasons you may want to see a specialist and not in your network.  Seeing someone IN their network and telling that doctor of your want to see a specialist (especially if you have gone to other urologists who have been unable to help) could be a big key.  Clueing them in that OTHER non-specialist urologists have been unable to help (maybe give a reason or two) makes it feasably ok for THEM not to fully know what to do with you either, without making them look bad.  This is one of the things we did to get our first out of network out of state referral, seeing some urologists that they stated we could see as opposed to the one requested.
Our previous family dr was awful at requests/referrals/appeals.  Even our new one seems to not know what to put on them.   I have given our doctor's office VERBATIM things to write on the appeal or initial request.  they actually didnt know much about it at all, so my help was imperative to the request.  Try to keep it short or alert them that you will email or fax them the information to be added.  Most time faxing them info leaves less work for them.  Send it on a sheet that is solely to go to the request/appeal with only that info so they can just add it to the papers that they send.  Make sure it sounds professional using the proper termanology.  Again, keeping it short and to the point is preferable.
ALSO if your doctor's office is not so keen at doing the referral/appeal thing, there should be someone at the insurance company who can help you with that.  I did my first appeal by phone with the insurance company.  The person on the phone was a great help in alerting me to what they were looking for as far as medical records and information that would be necessary to have a positive outcome for our request.

I would definitely get the other test done, though.  10% is big enough to want to have it done!

[RedSunn]

Please tell me what is VED
Thank you

[RedSunn]

What diagnostic tests are there?  Our family doctor is willing to write us for any test we need, as long as we find a place to do it.  My son has a 60-70 degree bend to the left that then the tip curves downward.  I know of a penile dopplar, and ultrasound flacid, semi-erect, and erect which I think is also supposed to detect bloodflow, but we know of no other tests.  Our urologists in our state are useless and have no idea how to help the boy.  But we did find 2 dr.s out of state, we just need testing first, I believe, I just don't know what tests...

[RedSunn]

I would ask her to make an appointment with her to fill out the forms. (we have one doctor who does that with us.  I know that it takes a long time, and he never seemed to mind when we made an appointment for forms.  I'm not sure if that's cause they're getting paid to do it or not) and if she will not do it, I would find a doctor who will.  Maybe your regular family doctor would be willing to write for your test, our family doctor is aware of our difficulty and he said to me that any tests I want I just need to find a place who can do them and he is willing to write for them.  Do not stop your quest for healthcare just because someone says no or is unwilling to help.  There are more out there who are willing to help, just not many who are knowledgeable ...

Well I see an NHS urologist in the morning. I'll probably be told something like "penises come in all shapes an sizes, I wouldn't worry". But i'll try and argue for an erect Dopler scan. I won't get a hold of Pentox as its not approved (im taking arginine and vit e at the moment). But if I get the scan i'll take the results that to someone working privately.

I've also taken pictures on my penis in different stages.

Sounds like you are prepared. Be ready for the "textbook response". Good luck and keep us posted.

[RedSunn]

Please clue me in about this Fast Size.  My son had an awful experience with the X4 Labs device which left him permanent difficulties...  Is this kind of the same? 

That sucks about the doppler. I can't understand why they won't do it. I only had to sign a few forms. You should get the fastsize. I've built a little over half an inch in length from 10 weeks of use. It has also eliminated a lot of my indentation at half mast.

[RedSunn]

PLEASE BE VERY, VERY CAREFUL!!
My son got X4 labs.  They are basically a joke when trying to find info on how to use it or get your money back.  My son tried it a few times, and is permanently disfigured by it! he has a 'dent' towards the tip of his penis and now it curves to the left even when flacid when it was not like that before, so PLEASE, PLEASE, be careful, and also make sure that you are not cutting off circulation, that could cause permanent damage also!  I FULLY RECOMMEND THAT NO ONE EVER GET A DEVICE FROM X4 LABS EVER~!!

Only a few months of using the FastSize improved my girth and length to the point that even my wife has noticed the change.  I can count on one hand the number of times I was able to wear it the recommended 8-hours a day during the last five months of use.  Lately, this has been more like 2-hours a day, and I believe that is why my rate of improvement has greatly slowed.  I cannot say that my curve has changed by using this treatment, at least so far.  I am told to expect upwards of 6-12 months to truly evaluate the effectiveness.  If 6-12 months is based on 8-hours a day (1,440-2,880 hours), then 2-hours a day means something more like 24-48 months(!).

I purchased the peyronie's package from FastSize dot com.  Enter LEVINE in the discount code for a $30 USD discount.  Stamen Medical Systems is the US distributor, and they do not offer the discount.

So I will really have to start something like fast size. Looking at their site, I'm a bit skeptical, it just seems really tacky and some on the testimonial pictures seems altered - but I suppose at the same time that's the industry they are in and they know their market. I'm no so much bothered about my curve id rather keep it to be honest, I just want to regain my lost girth and length - about an inch in length and considerable wasting in the middle.

I think I will order fast size then, there seems to be a few "official" sites though, I'm wondering what one I should be buying from.

[gavman]

Thanks for reply gavman! Do let us not how you are getting along as time passes.

No worries wayne999, I'll just keep updating my post below as I go. If anyone has any questions at all please ask or PM. Cheers.

[wayne999]

Thanks for reply gavman! Do let us not how you are getting along as time passes.

[gavman]

Hi wayne999.

Today will be Day 9 of healing/recovery. Everything seems to be healing well at this stage. The swelling and dark bruising on my penis and scrotum, which peaked at day 3, has almost totally gone. I'm already starting to lose the numbness and gain back sensitivity in my glans, which is great.

I've been having nocturnal erections - or semi erections - since day 3 (from memory). I say semi because they aren't above approximately 75% erection level - I hope! They do cause some pain, but not an intense pain, more a dull pain. I took pain killers for the first few days to get sleep and rest but then stopped taking them because the pain wasn't unbearable by any means, and I don't like taking them.

I was told by both the assistant surgeon and the surgeon that I'd lose approximately 1cm in length. It's not possible at this stage to tell what the end result will be, I'll have to save that for another 6-7 weeks time, all I can say now is that semi erections are shorter by roughly an inch an a half - but they are semi erections so this tells me almost nothing. Today (start of Day 9) my flaccid length has increased by about an inch from immediate post-op. It is not at pre-op length yet, it's about an inch less at this stage. Some of the decrease in flaccid length will be due the the procedure and some due to tight ligaments and tissues following surgery. Not a worry for me at this stage at all - and what I've lost I will stretch back manually.

When it is flaccid it now hangs differently (if showering for example), the dorsal side (top side) is visibly shorter than the ventral side, which is to be expected given that they shortened it by excision and plication. There is a slight left lean when flaccid now, and a slight left curve during semi erection, but this has decreased heaps since over the last week, and seems to be straightening out again. Either way, no bother.

My semi-erections are indicating that my erection angle is now above horizontal - by how much I cannot say at this stage. My erection now appears to curve up about 10 degrees, which I asked for, so I'm really happy about that. The corpus spongiosum is not filling up very much at this stage during semi erections, I'm not worried about this, I'm sure it is just recovering like the rest of the penis. When it recovers it should provide more size and strength to my erection.

I didn't ask about girth loss before surgery (consultation) because I'd never come across it in all the literature I'd read, nor from the first hand experiences of others. But I have noticed that my girth seems to be unchanged, or if anything slightly increased during the semi erections - I haven't measured precisely though and it could just look thicker/fatter because it is in a shorter state. It is well plausible that you could gain functional girth because erection quality normally improves in men who have this operation (for congenital curvature at least - not sure about Peyronies).

What else? My only concern at this stage is the de-gloving area healing. They are stretched and pulled everytime I have a semi-erection and look a bit raw compared to the first few days. I have my post-op consult tomorrow and will ask about this to be on the safe side. I only had 3 days of anti biotics which surprised me, I had alot more after a frenuloplasty last year.

I can see one of the sutures when flaccid but it just looks like a small bit of vein, nothing concerning at all. I can feel it to touch, but hardly. The surgeon has done an amazing job of burying them.

19/04/2010 - had my post op consult, I had some irritation around the degloving stitches, it looked raw and too moist so I went to the GP and got some more anti-biotics just to be safe. The nurse told me I just need to air it more and let it dry out. Everything else seems to be coming along fine, the stitches should start felling out this week. I asked about the possibility of recurrence of the curve and I was informed that my surgeon has not had any long term failures and thus cannot say what the cause would be if one were to fail. Hypothetically it would most likely be due to peyronies, and unrelated to congenital curvature. That has put my mind at ease. I also asked if it would be stronger if I waited more than 6 weeks to heal and I was told it wouldn't hurt but wouldn't do much over 6 weeks either.

29/04/2010 - things are going well, it looks like all the stitches have dissolved and the de-gloving line is 95% healed. Erections are a bit sore, which doesn't surprise me as the internal incision areas are still healing up. If it wasn't for the fact that I was encouraged to have erections in order to stretch the tissue, I would have though I wasn't ready to have them yet, as they don't feel comfortable.
Having said that, it is great to see my erection actually curving up a bit and my erection angle seems to be around 45 degrees, which is excellent. I had no idea what it would be, it is really strange, like having a totally new penis, but ultimately I'm very happy about it. I don't know what the length will end up as, it is visibly shorter at the moment, but I think more length will come when I can do some manual stretching to loosen my ligaments up which feel VERY tight at the moment. My EQ is probably 95% and as it grows to 100% more length will come. Girth also seems to have decreased a bit, not heaps, but noticeable. I will get this back with some manual exercises post 6-8 weeks healing.
EQ is off the charts compared to anything before, it is amazing having such a hard erection, I was concerned pre-op that maybe I had some vein related pressure problem, but this isn't the case! It's a common thing with congenital curvature to have crap EQ, so this is a real new experience.
Mentally, it is quite draining to say the least having your old mate go through this, but I keep visualising and feeling how I want it to turn out and that keeps me focussed if I start to worry. It's now under 3 weeks until I can use it officially, I am looking forward this time just for the relief of knowing that the main healing time has passed and I can start gently with some penis exercise to regain my length and girth.
What else? the sutures can be felt by touch and also generally felt, but they are not pronounced and could be passed as small veins. By 6 mths I imagine they'll be invisible. My penis turtles alot..he knows he's healing and is reluctant to hang like he used to. But that's understandable at the moment. So at just past Week 3 I'm happy with the healing, I'm more than happy I had the surgery, and I'm looking forward to even more improvement.


Cheers  

[wayne999]

Hi, I just had a plication operation for congenital downwards curve (30-40 degrees), by a surgeon in the UK. I've posted a thread in the personal history section. Cheers.

Hi gavman

Please keep us updated with your progress. Are you expecting/have you noticed any loss of length/girth etc after the surgery? I suppose its a bit hard to tell this soon after. Please let us know your progress, all the best!

[gavman]

Hi, I just had a plication operation for congenital downwards curve (30-40 degrees), by a surgeon in the UK. I've posted a thread in the personal history section. Cheers.

[diminishedhope]

In my early teens I gradually (at least a 2-3yr span) developed a downward curve in the lower portion of my erect penis. It was very straight prior to my teens and to my best memory was about 30deg up from horizontal while I was standing on my feet. After the curve dveloped it would always point downward when erect, even if I could've stood on my head. I would like to here what you men think,,,
  Was this possibly a congenital curvature?
  It (the bend) gradually dissapeared after I began (about age 17) keeping my penis trapped upward against my waistline each night for several years thereafter. During the begining of this method of trying to keep it upward at night I felt a lot up pressure and discomfort in the area of my bend during night time erections. But that discomfort gradually diminished.
  Or would it be some form of peyronies?
  It was also this time when I first noticed the hourglass shape starting to form during the early stages of most erections.
  I never noticed any lumps or hard spots till age 28.
-diminishedhope

[newguy]

Brooksbro - It good to hear that some progres has been made, even though you've only worn it for a few hours a day. A few others have had similiar experiences here I believe. I really do think those wearing it for 8 hours a day are in the minority.

[BrooksBro]

Only a few months of using the FastSize improved my girth and length to the point that even my wife has noticed the change.  I can count on one hand the number of times I was able to wear it the recommended 8-hours a day during the last five months of use.  Lately, this has been more like 2-hours a day, and I believe that is why my rate of improvement has greatly slowed.  I cannot say that my curve has changed by using this treatment, at least so far.  I am told to expect upwards of 6-12 months to truly evaluate the effectiveness.  If 6-12 months is based on 8-hours a day (1,440-2,880 hours), then 2-hours a day means something more like 24-48 months(!).

I purchased the peyronie's package from FastSize dot com.  Enter LEVINE in the discount code for a $30 USD discount.  Stamen Medical Systems is the US distributor, and they do not offer the discount.

So I will really have to start something like fast size. Looking at their site, I'm a bit skeptical, it just seems really tacky and some on the testimonial pictures seems altered - but I suppose at the same time that's the industry they are in and they know their market. I'm no so much bothered about my curve id rather keep it to be honest, I just want to regain my lost girth and length - about an inch in length and considerable wasting in the middle.

I think I will order fast size then, there seems to be a few "official" sites though, I'm wondering what one I should be buying from.

[falcone]

Well no contact, so far, will probably take a while. I think im going to go down and have the dopler scan done by a peyronie's specialising radiologist in London. You know how much the procedure would cost privately?

I stopped the arginine due to its link with collagen formation and the fact that I have quite bad keloid scars on my chest.

So I will really have to start something like fast size. Looking at their site, im a bit skeptical, it just seems really tacky and some on the testamonial pictures seems altered - but I suppose at the same time thats the industry they are in and they know their market. Im no so much bothered about my curve id rather keep it to be honest, I just want to regain my lost girth and length - about an inch in length and considerable wasting in the middle.

I think I will order fast size then, there seems to be a few "official" sites though, im wondering what one I should be buying from.

[UK]

Not sure where you went for NHS but I went to the Andrology unit at UCHL (David Ralph's clinic) and they offered a MRI quite easily without any questions. One simple form they filled in.

[chiguy]

That sucks about the doppler. I can't understand why they won't do it. I only had to sign a few forms. You should get the fastsize. I've built a little over half an inch in length from 10 weeks of use. It has also eliminated a lot of my indentation at half mast.

[falcone]

So I had my appointment with an NHS urologist.

She dismissed me to an extent as she couldn't feel a plaque and as my the erect picture I showed her apparently didn't exceed the required 30%. She is a good urogolist in general (she actually performed an Frenoloplasty on me last year so was suprised when I got her for this appointment).

She said she will refer me to the guy who is more well versed in this kind of thing (which will probably take another few months id imagine) but she said that they are reluctant to give Dopler scans and I probably won't get one because of all the forms that they need to fill in or something.

She also said that other than a nesbit and vitamin E there is not much that can be done, she said Pentox won't be legalised here "for obvious reasons" but didn't elaborate.

My curve is not my issue as I always had a congenital curve and it is upwards.  It is the hour glass deformity and what I percieve to be around an inch in lossed length which I fear is getting worse which scares me.

Im a little concerned over what I should do now. I am taking around 800iu of Vit E per day and 2-3g of Arginine. I could buy fast size to try and recover the length but im really not sure.

[Old Man]

Wayne:

Yep, I have been using a VED for 15 years now. I had a radical prostatectomy in April 1995 which was a non-nerve sparing one at the time. The robotic ones just came into being a year or so ago. I had a slight ED problem since the age of about 55 (now near 81) so I have been using retainer or cock rings up to the operation to hold up erections.

The VED was prescribed for me to help with the ED and to give the old tool exercise to regain the lost length from the surgery. I had a very large prostate and the urethra was shortened by an inch more than normal operations for the cancer. The overall process shortened me by about 1 and 1/2 inches.

The ED pills were not in at the time, so the VED exercises were done to help with the lost dimensions. I used a protocol that my uro and I developed as there were none known at the time. It took about a year of constant daily use to do the job. At present, I am back to the old size and maybe a bit more over those years. The urethra can and will stretch if done on a daily basis for extended periods of time. Just wish that the tunica would do the same thing!!

Anyway, the VED was the weapon of choice for me in getting me back somewhat to normal again. The jury is still as far as I am concerned about changing a congenital curve. There are several men that I worked with on their Peyronies Disease and after surgery that have tried unsuccessfully to use any form of manipulation that helped with their congenital curve.

Old Man

[wayne999]

Wayne:

Have not noticed any change in the U curve at all. This period of time includes 15 plus years.
So, as far as I know, in my case there is no evidence of any change in the curves.
Old Man

Are you saying you've been using VED for 15 years?

Yes, hopefully we can get other people to input also. Maybe there is a lack of results in this area because no has really committed to a longer-term type of approach.

[Old Man]

Wayne:

Again, with all my exposure to VED therapy over the past years, I have no record of any congenital curvature being affected in any manner through the VED usage.

However, I suppose that anything is possible if one keeps on using the VED over several years usage. In my personal case, I had always had a slight "U" curve which means it bends slightly upward in the middle of the shaft.

I have used the VED therapy to clear up my Peyronies Disease symptoms and still use it on a weekly basis just maintenance to keep my penis healthy. Have not noticed any change in the U curve at all. This period of time includes 15 plus years.

So, as far as I know, in my case there is no evidence of any change in the curves. Others using the VED may have some input on the subject. Hopefully, they will jump in and post an answer for you.

Old Man

[wayne999]

Has anyone heard of VED helping out a congenital curve? I remember reading on "penile enlargement forums" years ago about guys who wanted to actually induce an upward bend in their otherwise normal penises in order to hit the so-called "g spot". Apparently by using jelq-type techniques, over a period of (im going from vague memory) a few years (not months, or 1 year...so it did take time) they were able to apparently get the desired curve. It would seem to be that VED, over an EXTENDED period (daily use, several years, etc) could help out with a natural curvature condition ?

Interested to hear thoughts.

chiguy:

No, these devices if used with caution and common sense are not dangerous to use. I have very little experience with the traction units though.

The VED when used as stated above and on a regular schedule like the 26 week protocol can and will help with penile health. There are few, if any cases on congenital curvature being straightened. But, VED therapy can and will give one the best erections they ever had if they have any ED problems.

Old Man

[lwillisjr]

Well I see an NHS urologist in the morning. I'll probably be told something like "penises come in all shapes an sizes, I wouldn't worry". But i'll try and argue for an erect Dopler scan. I won't get a hold of Pentox as its not approved (im taking arginine and vit e at the moment). But if I get the scan i'll take the results that to someone working privately.

I've also taken pictures on my penis in different stages.

Sounds like you are prepared. Be ready for the "textbook response". Good luck and keep us posted.

[falcone]

Well I see an NHS urologist in the morning. I'll probably be told something like "penises come in all shapes an sizes, I wouldn't worry". But i'll try and argue for an erect Dopler scan. I won't get a hold of Pentox as its not approved (im taking arginine and vit e at the moment). But if I get the scan i'll take the results that to someone working privately.

I've also taken pictures on my penis in different stages.

[keepitstraight]

Hi everyone,

I updated my blog with some literature and info about penile curvature, mostly congenital: http://curvaturapenianadiscussao.blogspot.com/. Please take a look if you wish and once more thank you all for this forum. Anything my email is: keepitstraight80@hotmail.com

Best Regards
 Alberto

[chiguy]

I had the penile doppler ultrasound done in December. It wasn't as bad as I thought. First the technician did a scan of the flaccid penis. They put a special type of lubrication on there and then wave the wand around it. Then the radiologist will administer a shot to get you partially erect. Once you feel the response, you get up to a full erection and they will lube you up and wave the wand again. Then you are given time to naturally reduce the erection, but if you can't, then they administer a shot to bring it down medicinally.

The shot they give measures your ability to induce erection. The ultrasound detects the plaque, any scar tissue other than plaque, and measures the bloodflow.

All in all it took me about one hour. I was surprised by my results that it wasn't as bad as I thought and a few of my symptoms were mental.

[jackp]

falcone

Most urologist have a special ultra sound machine. They use it for kidney, bladder, prostate and other ultra sounds. This ultra sound machine can also do a Color Doppler of your penis. The first scan is with you flaccid, then the doctor will inject you with PGE1 and wait a few minutes and then scan you erect. This gives him a lot of information about you including peyronies plaque and venous leakage.

Like Old Man said erections are the key to quality penile health. The VED is an excellent way to maintain penile health.

Jackp

[falcone]

Thanks, Old man.

If I can get a hold of this peyronie's specialising radiologist, is it an erect Dopler Scan I ask for?

[keepitstraight]

Hi,

First welcome and thank you for your statment. Second take a breath and think: there is treatment and there is actually some options/variants for treating it! Your statement here is most important cause you actually introduced a well known problem but generally dismissed but the majority of Drs worldwide, belive me. I too have congenital curvature downward and im 25 years old. I have been dealing with it since lets say 19/20 years old. I will not go in much detail about the problem itself (for these past years i have been researching a lot about it and actually discussing it with some drs. worldwide, of course in a superficial basis). But feel free to PM me or email me in case you need any more details or support about it (im not a Dr. but im well aware of the problem and actually consulted some drs face-to-face). I should stress it: the majority of Drs. do not deal with this problem frequently, in fact most of them are not confortable (technically, experience, etc...) with it. So do not let you and your son be dessapointed by it, its fairly normal! There is hope. There are a bunch of Dr.s worldwide that can deal with this problem, and they are specialized particularly for dealing with it. So this is the first principly: search for a Dr. that is well trained, many surgeries, experience, informative, etc... (Where are you from?). There are alternative surgeries for treating it, but unfortunatly there still no consensus what should be redly applied, and that varies from Dr. to Dr. The majority advise Nesbitt or modified plicature alternatives (Esses-Shroeder, yachia, 16-dot plication, etc...). But in recent years there as been some good improvments in the excise and graft procedures and some Drs. do it. But i think it all depends specifically from case to case. Well i will not go further with details, please be free to ask any question to me or to anyone in this forum, there is amazing people here that can give support and help. I hope i can answer. email: keepitstraight80@hotmail.com

Best Regards

[RedSunn]

My son was diagnosed with congenital curvature so severe that the doctor said that sex would be impossible for him.  He curves down and twists to the left.  One side is 7 inches long, the other is 5 inches long.  I was wondering if there are treatments alternative to the nesbit procedure or shortening his penis.  He is extremely upset about having to hace some of his penis 'cut off' in order to 'fix it'.  The doctor said that any other surgeries like grafts or whatever can go very wrong and that permanent erectile dysfunction could occur.  What about dmso treatments?  Is there any verifiable evidence that it affects curvature in a positive manner?  I also saw that dmso can be toxic or permanently detrimental if used improperly, how would you know how much to use and when?  What confirmed positive and negative results can happen when using dmso?  I saw something about skin clearing that using dmso can make your skin translucent while using it.  Is this permanent or long term?  Please help, we have been suffering through this for years, first doctors poo poo'd him, then sent him to urologists who had no idea what to do with him, then we got this doctor who seems to be educated and does a lot of penis specialty surgeries, but seems unpersonable when it comes to the aprehensions of a teenage (18) boy.  His entire life seems to be on hold until he can get 'his biggest problem fixed'  because he will not have relationships with people, especially girls because of it.  I know this is a mental thing that needs addressed, but he does not want to have to deal with a girl finding out about it or having to tell her, so he simply stays away.  We are making the arrangements for the nesbit, because he sees no alternative to it, and his health insurance to cover the surgery most likely runs out in June. PLEASE HELP!

[Old Man]

falcone:

Most all of us agree that erections are required to keep one's penis healthy. Only in certain cases should it be avoided, however those are few and far between. (Not sure what these are, just that it has been said not to do them, etc.) I would recommend that if it is possible for you to have them, by all means do.

Others may jump in and give their opinion too.

Old Man

[falcone]

Anyone?

I just mean are erections something I should be trying to induce rather than avoid?

[falcone]

Well im still trying to get a hold of a Peyronie's specialising radiologist based in London from the recommendation of a guy on here. I might just bite the bullet and pay for a private erect scan nearer home, but I just don't trust anyone that doesn't specialise in it, given my false diagnoses 3 years ago.

I will be about another 4-6 weeks before I am contacted by the NHS urologist, so I don't have pentox yet.

At the moment I am taking 800mg of Vit E and 2g of Arginine daily and hoping for the best.

Can I ask - are erections in general desirable for combating the progress of the disease and reversing the scar tissue? Should I be trying to create prolonged erections/masturbate perhaps a short time after I have a dose of vit E and Argninine.

[chiguy]

I am early on in the fastsize, so I will be able to let you know in a year or so. I asked Dr. Levine the question and he said in his studies, the size appeared permanent providing individuals used the device for 6 months. If there is tissue growth, wouldn't it be permanent? If you liken it to a muscle, then there must be maintenance (at least minimally), which to me would mean an erection.

Personally, I'm unsure as well. Judging by the fastsize forum, which I viewed, many people stopped and still offer advice, but there doesn't seem to be any reports of people losing their gains, save for tenths of inches.

[Old Man]

chiguy:

Don't count on the gains from the fastsize being permanent. Any stretching of ones penis by whatever device will return to its original state if a maintenance use of the device is not continued. VED does return one in most cases of Peyronies Disease to their original size, but thereafter it must be used to keep what gains have been made.

I am told that the traction device stretching is the same way. In addition, my uro group in my home town states that any gains of one penis size by mechanical means is only temporary if the stretching is not kept up on a continued basis.

Just my take of these devices.

Old Man

[chiguy]

Yea I think that's the main difference between the VED and fastsize. The VED is primarily for ED problems and moderate curvature from peyronie's like hourglassing. The fastsize is not generally good for ED, but can straighten any curvature to an extent. Plus, the gains are permanent.

[Old Man]

chiguy:

No, these devices if used with caution and common sense are not dangerous to use. I have very little experience with the traction units though.

The VED when used as stated above and on a regular schedule like the 26 week protocol can and will help with penile health. There are few, if any cases on congenital curvature being straightened. But, VED therapy can and will give one the best erections they ever had if they have any ED problems.

Old Man

[chiguy]

I've never heard of anyone saying it is potentially dangerous. It comes with physician approval. I have experienced no pain with the device. It only seems to help.

[falcone]

Are they not potentially dangerous?

[chiguy]

Falcone,

You can always order the fastsize now since it can't hurt. Even if you don't have peyronie's it will help. Same with a VED, whichever you prefer.

[falcone]

I have some L-arginine to now. So about 2gs per day?

I am going to see a radiologist specialising in Peyronie's in London by someone here (Im in Glasgow, Scotland and I don't think there is anyone near here that specialises that I can find anyway), will cost hundreds of pounds including travel but I don't trust general NHS urologists. As for Pentox, maybe if I get a diagnoses from this radiologist my GP will give me it. But 2 months is a long time to wait for this urologist (I suppose I could see a general private one but they might be clueless to) and in that time I could lose more penis size so i'd better get down to London soon!  

[bart15]

Well as anticipated, my GP refused me Pentox to be on the safe side on the account that im "self diagnosing" and made an referral to an NHS urologist that will take around 2 months

Well I think going to the uro will be good because they should be more knowledgeable on the subject matter and you should have better luck there. I don't understand how doctors are hesitant to prescribe pentox...it has few side-effects (Which if you have no caridovascular problems should not be an issue), has from what I've read on the product monograph on the Health Canada website barely any drug interactions, is cheap, and most importantly, has been documented to have positive effects. Falcone, if you do not have the Iran study on pentox use for Peyronies Disease I can send it to you if you PM your email to me.

I agree with chiguy; you need to get the pentox and L-arg (pycnogenol is also reported to increase L-arg potency). I take vitamin D3 and E as well, but if you take vitamin E try to get a full spectrum one rather than a cheap one that only contains d-alpha tocopherol or just the tocopherols. Vitamin E contains 8 groups; 4 tocopherols and 4 tocotrineols. Peyronie's disease insitute suggests getting a full spec vitamin E, and George on this forum has stated that he saw some results with it. However, he has stated to me that vitamin E will only go so far and you definitely at this moment should be looking at getting the pentox as your foremost supplement. Also, I think you should look into getting a VED or traction device. I'm 23 years old and I just started the VED and am getting my FS traction device next week. They will provide you with fairly controlled (If you are conservative) tension against your penis; rather than jelquing, which I tried as well and actually experienced some pain under my right testicle as well.

Bart

[chiguy]

Unfortunately many of us on this board being in the US and Canada do not understand the British healthcare system. Is there anyway that you can see a different general practitioner? Perhaps can you pay out of pocket to see the urologist sooner?