Hey I hate to be a pill about this, but my question never really got answered because Kobold's post interupted the conversation.  Does anyone have any ideas or suggested for a penis that is curved and twisted.  A majority of my curvature is dues to the twist.  And it doesn't twist like halfway down, the entire penis is twisted, I can feel it inside as well.

Is it possible to fix this with surgery?  Is there anything that can be done to fix this?


Any help would be cool.

(FYI yes this is the same person as before with a ridiculiously similar name, I just changed it because it was the same as my e-mail...and if any of my friends googled it....yah.)

Regarding your twist, it really depends if it prevents you from having sex. If it does, then you should get it checked out with a doctor. But if most of the curve is gone, then maybe you don't want to risk messing it up more.

I understand your surgery didn't go well. Do you blame your doctor for it, or is it because you were a "difficult" case? Do you even know if your doc had extensive experience with the surgery in the past? I would suggest you go see a doctor that has a specialty in treating Peyronies/chordee. Go to the website of the biggest/most prestegious hospital in your region and search for the Urology department. It should give you a list of doctors and their specialties.

Hello Irish,,,I too was twisted and bent like a donut and in a lot of pain all the time, whether erect or flacid...I would not consider surgery at all until the last resort...I used Topical Verapamil and it helped me, it took 5 months and i also used 800iu of a natural vita-E,,and then i got into massaging the plaque every morning when in a shower,,,i finally came back to about 85% straight,,good enough for sex with my wife and or masturbating too....My suggestion is to keep reading the post's and info given by this forum as it is the best and don't give up,,,it takes time.....If you have any more questions just ask or send me a message on my private e-mail........kimo.......

Quote from: IrishB OCD on November 18, 2006, 01:19:30 AM
Hey I hate to be a pill about this, but my question never really got answered because Kobold's post interupted the conversation.  Does anyone have any ideas or suggested for a penis that is curved and twisted.  A majority of my curvature is dues to the twist.  And it doesn't twist like halfway down, the entire penis is twisted, I can feel it inside as well.

Is it possible to fix this with surgery?  Is there anything that can be done to fix this?


Any help would be cool.

(FYI yes this is the same person as before with a ridiculiously similar name, I just changed it because it was the same as my e-mail...and if any of my friends googled it....yah.)

Thanks guys.

Adam, ya I blame the doctor.  Unfortunately he was not very forthcoming with information before the surgery.  And I trusted him because he was very well respected and from a urology department from a very well respected hospital.  He said pre-surgery that he would be able to fix any curve and and any twist.  He got a little bit of the curve, none of the twist, and his sutures busted about a month after surgery causing severe brusing and some pain.

Kimo, great advice, just unfortunately I have congenital curvature and not peyronie's, so none of those things will do anything.  My penis is shaped like this naturally, there is no plaque forcing it to do this.  SO the only answer is surgery.  And masturbation/sex is sort of possible.  If I hold it and manually twist it back up right the curvature is only like 5 degrees.  But if I let it sit naturally it automatically twists to about 80 to 90 degrees.  So it's flexible enough that I could hold it straight for sex, but it would have to be held there.

So thanks for your thoughts guys.  I have an appointment with a different uroligist in January so hopefully he will have good news...but so far he is against a second surgery because of shortening and loss of sensitivity.

I need some help with deciding what to do.  I went to a urologist 2.  In fact, one told me to fix my Peyronies Disease that I developed 1 1/2 years ago, I was told there was no option just surgery. The 1st Dr wanted me to do the tuck to cancel the 90 degree curve.  I was told I would be 50 to 75% straight, not good odds for me, so i went to another Dr.  This Dr told me to do a penile implant the rods semi ridged.  I think that would make me some kind freak.  I can't try any meds as I had a back fusion and a disc removed. I believe the Peyronies Disease came from a improper insertion of a catherder. I never had the problem before that surgery, in fact i have 9 children.  Now with this Peyronies Disease, life is almost useless.  I'm having a lot of trouble dealing with it. My wife is very supportive and says it doesn't matter to her but deep down I know she doesn't like the idea on not having any sex at all.  I just feel much less of a man.  Can someone tell me there views on these two surgery's?  I have a appt with a 3rd Dr.  The one that told me about the implants told me it would fix it by 98%.  I'm afraid to have either one done. I can't Handel it if they don't work.  I was very happy to see a support forum on the net and now I don't feel so alone.
JIM


Hawk: punctuation added

Welcome to the boards, Jim!

None of us can or should tell you what to do. However, we can tell you to gather more opinions before you make any choices. And, you might find here that there ARE some other options.

Remember this. Your situation today is not going to be appreciably worse tomorrow, nor much better. But if you stat to take steps, you may be able to make it better. If you have a supportive wife, then you might be able to make inroads on your Peyronie's Disease (Peyronies Disease) my other means, and avoid surgery altogether.

So, my advice is to step back and take a breath. Try to find your center as a man and go to that stronger place. Take some time to learn what your options are - you do not have to know all of it within two days! Then start to do something for yourself, and let time help you heal. Even if you do not get better, you will have given yourself a gift of self-care, and that is the start to healing. No surgery will help you feel better unless you come to it prepared and convinced that you have done everything there is to avoid it, IMO.

Tim

Irish,

I think your only good answer to this question will come from a highly acclaimed (not self-acclaimed) penile surgeon after they examine you.  I think the typical urologist would have no clue, even after an examination and as badly as we would like to answer your question, we certainly can't answer it with or without an examination.

I have the view that there are no more than half a dozen surgeons in the US that would ever be a consideration in cutting on my penis under any circumstances.  In fact my list is shorter than 6 but I allow for the fact that their may be a few I don't have information on.

Thanks for your input. It helps to talk about it. I went from it's No big deal to Upset now Angy. I just wish it would go away as fast as it came. Is there someone out here that had either surgery done? Neb or Implant? if so can you share you thoughts on it. my scar is Right under a nerve and is risky one Dr says it will be okay for the Neb and the other one says implants are the best why to fix it this Dr told me that if i had the Neb done it could cause impotence and need an implant anyway so its best to do implants he says kill too birds with one stone without losing length. I guess I'm just looking for some kind of hope. by getting input.
Thanks for letting me join.
Jim

jtl,

From what I've read, when you pump up an implant, th eimplant gets harder, and maybe a little larger in diameter, but I don't think that they increase in length.  So, if you have implants, whatever length you end up with when flaccid will be essentially the same length when 'hard'.  

If there's anyone on here who's actually had implants, please correct me if I'm wrong.

BTW jtl, you might want to look around at some of the other subject threads here on the forum.  There's always a lively discussion going on over at the 'VED and Mechanical Devices' forum and it's a good idea to keep up with the 'Developmental Treatments' too.

Good luck to you in your quest for knowlege and again, Welcome to the boards.

That pump wasn't the offer they wanted to do the rods looks like a rubber tube with a spring inside always erect. see what i was trying to say is that if i went with the 1st option The Tuck i would lose an inch in length then if it didn't work have the implants. so by doing implants there would be no loss i would have what god gave me. I joke with my wife and tell her maby i should get the springy Dingy. I was hoping that someone could shed some light on the effects after it heals on both pros and cons of either surgery
Thanks Jim

Steve and jtl:

IMHO, implants are the LAST RESORT, after all other options has been thoroughly explored and failed.
As we all know, there is no reversing an implant operation.

In the what it is worth dept: There are three types of penile implants. One is a metal coil type spring inside a sheath of material and it remains the same all the time with no pump mechanism. Another is one that has its own internal pump and valve assembly that can be pumped up and deflated. The top of the line is the one that has a pump in the scrotum, a resevoir for the neudraulic fluid in the abdomen and the inflatable rods implanted in the corpus area of the penis. The last model is considered the best, but does in some cases require being replaced if the fluid system fails for any reason. All three models are very pricey, BTW.

Again, bottom line at least for me, it would be the last resort in having an implant done. My mother-in-law's last husband had one done before he passed on and it worked perfectly for him. He had Peyronies Disease, ED and waisting away of the penile corpus tissue, so it was the last resort for him. He was, incidently well pleased with its operation.

Old Man

I'm just trying to find the best soulotion. I'm going for a 3rd examination soon. My Peyronies Disease is so bad that it prevents sex in anyway shape or form.I also read the the VED may be an option. The erection is not the problem at this time.If i understand it right the VED may help to stretch the scar over a period of time. This maby an option for me. (it may not Hurt to try it) So far in only 2 days on this forum I have so many questions to ask the Dr. It's been a real help.
Thank you Everyone.

Jim - it is my advice to do nothing right now.

That may seem awful, but in fact, it sounds a great deal like you have surgeons who want to cut first. The thinking among urologists is that nothing works except surgery, so go there first. And most suggest waiting for a year first (you may consider the time you spent befoer going to them as counting towards that year). Nonetheless, it sounds like they are not willing to entertain any alternative approaches.

It may be that your case is so severe that nothing else is likely to work. But might you not feel better if you knew that you had exhausted all other avenues first?

Tim

Jim,

At this point, even with such an extreme curve, I would not opt for surgery just yet.  AA4500 (see our 'Developmental treatments' topic) is due to be available in a year or two.  If it's as effective as is rumored, you may regret having surgery to get the same results as this non-surgical treatment would have given you.

But until that happens, I'd just try every Oral treatment available (see the 'Oral treatments' topic) or Pentox, if you can get it prescribed.

More information on these treatments can be found in their repsective topics on this forum.

jtl

Not to sound like everyone else, but above all else  the most important thing is to DO NOTHING!

I have something called congenital curvature, very similar to peyronie's except it is not caused by scarring.  My penis was literally shaped into a curve.  So there really was no option besides surgery, so I did it.  And I regret it ( you can read my story later if your int. I'm just trying to give a quick synopsis so you can learn from my mistake)

I had a pretty decent curve, with a whole lot of twisting which leads to a 90 degree curve to the left (sound familiar?) so I got the surgery.  Well it fixed a majority of the curve, but none of the twist leading me with about a 85 degree curve, 700 $ well spent

Now I'm not saying this is gonna happen to you, but my doctor ( who had like 40 years experience, came recommended, and was on the uroligists board at a major hospital in my area) guaranteed that he could fix the curve and the twist.  His exact words were that he could fix any twisting/curving that's easy, jsut there may be shortening (i ended up losing like an inch).  Then after the surgery...his exact words "It's never possible to get it completely straight...." as he trailed off.  They don't care about your penis, if your surgery goes ary (sp?) they will still be able to have sex with their wives.  So they will rush into surgery, but it's up to you to wait.

With peyronie's it takes time to stabalize, there are other posibilities besides the pills that you can't take, and don't rush into anything...especially an implant.  BEcuase once you get that nothing can take it back.

And just you know I have looked at the implant surgery, it doesn't make you a freak.  Your penis can be bent downward so that no one will ever know, you won't walk around like Will Ferrill in Anchorman all day long

Good luck man.

What would you suggest as to how long i should wait?
The wait and see has been well over 1 year. I really want a normal life either way it's not to normal. Theses surgeons all make sense in a sick kind of way. Deep down i know there is no cure and it could just go away. It may sound selfish but i get upset when i here others say its going away and I'm still here hoping. Not that i wish this curse on anyone in fact when it 1st started with me it was painfull. Then came the sever curve. I think if I would have went to a Dr when i was getting pain instead I waited. I was so embarrassed to go I thought it was some kind of infection. Then one night went to bed and tried to get intimate in a dark room and I knew something was wrong. I turned on the light and freaked out. I don't wish this on anyone. You hear of all kinds of illness that can hit men and woman but never about this. There should be some ligature for men how to prevent this. If I knew the pain was the 1st sign I would have went to a Dr right away and started vitamin E maby then it would have not hit so bad. Its frustrating when you go to a Dr and you know when you show the a picture and right away surgery is there answer. I am going to try one more Dr if i get that reply again ll give it some more time. This takes it toll on my marriage sure my wife is very supportive but its just not the same for me. I just don't feel like a whole man. I feel like I belong in a freak show. Thank you so much for you advise. I don't know what to do and don't plan to do anything invasive until i do.
Thanks Again
Jtl4661

      Jtl4661......... we know it's tough. You've got a good group here and we know a thing or two on how tough this is at first, BUT... we know a thing or two about helping fix this stuff. Please go to the Psychological Component thread and read « Reply #161 on: September 20, 2006, 01:24:08 PM ». We've got lots of good stuff here. It's all for us... and you.

Quote from: Angus on September 20, 2006, 01:24:08 PM

Jim,

You are here asking questions, and that is a terrific start. Having others who share your problem - with whom you can talk,a sk questions, rant - is of enormous value. I also think that we know a lot about Peyronies Disease, and can help others to avoid errors.

I expect that you will find that a surgeon will respond to you depending on what you want. When men come in demanding to be better NOW (or seeming to feel that way), I think that surgeons will offer surgery first, especially if they do not think that any medical help is likely to really work anyway. OTOH, if a man comes in and is ambivalent about getting surgery, and wants to try medications, they will usually go in that direction first. After all, there is NO gain for a surgeon to operate on someone who is even a little bit reluctant. This is especially true when the outcome of the surgery is to be "better", but still different than before (ie, shorter, or with erectile dysfuntion). So, in Peyronie's Disease, the "hurry" to operate is going to be determined by the patient usually, not by the doctor, IMHO.

Here is what I think the risk is (and some have come here and posted about experiencing this): When Peyronies Disease strikes, it can devastate us as men, and that takes time to adjust to it. If we rush to get surgery, it makse sense (at least to me) that the outcome is not likely to be "better" if we do it RIGHT NOW, or if we do it in, say, a year (I know - that may sound like forever to you right now). Since the outcome should be the same, the key issue is readiness in the patient.

Being ready for surgery does not mean being fed up with having Peyronies Disease. It means having adjusted to a devastating personal change, and accepting the things are not the same (you know... life on life's terms). it also means having EXHAUSTED alternatives, IMHO.

If i were you, I would look hard at the VED, the use of Pentox, arginine and viagra, and consider a mix of supplements like vitamin E, etc. The devil is in the details with these things (like what kind of vitamin E to take), but if you made some gains - real gains, it might return your sex life, and then return your confidence that you can get better (or better enough) to avoid surgery. And if you did not get better with those steps, then I think you would be all the better prepared for a surgical outcome.

Tim

Thank you,
You guys are great! Everyone has been so helpful to me.  It gives me a new outlook. My wife says I'm torchering myself by coming here and doing allot of reading. I tried to explain to her that its not toucher to learn about it and my options. I laff because most woman don't care either way. I'm going to the 3rd Dr and am going to ask about the ved and meds. I think the meds are out for me at this time as i had a back fusion and can not take anti-imflamitorys. I'm not ready for the surgery right now, as i have got allot of feedback here. You guys really don't know how you really helped me in just a few days. I went from self pity and Angy to accepting this happens. I think I'm on my way to making the right choice. You are right when I go to the Dr i say i want it fixed not realizing I'm asking for surgery. Then when the mention it I blame the Dr's. I know more now that this is a preference now. I just have to figure out what i really want and don't want to jump into a permanent failure. I want to now rule out all the non-surcial ways first. Thanks to all of you I'm starting to see I'm really not alone and its not that big of a deal it just sucks.
jtl4661

Hi

I'm looking for some feedback from anyone who has had the Horton-Devine method of surgery.
My curve is about 45 degrees and has caused some shortining.

Ray

I have had an bottleneck efffect, where the tip(mid way up shaft) is incredible floppy and the bottom hard, off and on for a couple of weeks now. I wonder if anyone else with this issue has had surgery and what results might be. Also, what doctor was used. Any suggestions. I am 26 years old, and this is ruining my life!

this is to TIM468...or anyone. I notice people mention to take/ use of Pentox, arginine and viagra. As someone who does not
have erection problems...whats with the taking of viagra. Are you suggesting taking it even if your not going to be having sex. sort of like....just before going to bed. I dont quite understand. Where does viagra come into to play in the help for Peyronies??

Here is a post from Oct. that addresses your question.

It would be better to post questions on this subject in the "Oral Treatments" topic.

Hope this helps.

Quote


    Re: Arginine / Nitric Oxide / Etc.
« Reply #1063 on: October 22, 2006, 11:23:01 PM » Quote Modify Remove Split Topic  

--------------------------------------------------------------------------------
ComeBackid, this whole thing revolves around ways to mobilize nitric oxide.  It is the nitric oxide that actually does the work.  The problem is that the plaque itself contains abnormally large amounts of both TGF-beta and PDE-5.  TGF-beta causes localized over expression of Arginase which subsequently blocks nitric oxide synthesis from Arginine from food sources.  That is why we want to block Arginase or TGF-beta to stop the Arginase in the first place.  Pentox does just that, thus the end result of Pentox administration is to open the door for the Arginine channel.  Supplying the Arginine is then the logical next step.  But the problem doesn't end there.  PDE-5 also blocks the production of nitric oxide in the plaque.  So we need to also inhibit PDE-5.  This is done with the Viagra.  Thus, the three in concert open the door to production of nitric oxide within the vicinity of the plaque and it is the nitric oxide itself that actually enables the body to break down the plaque and remodel it into normal tissue.  For this purpose (the Pentox/Viagra/Arginine treatment), I would ask your doctor as to exactly what form of Arginase works best.  For anyone else NOT TAKING PENTOX, I would advise to check the information on bodybuilding.com.  For those on Pentox, the Pentox and Viagra are ALREADY opening the door for the Arginine.  But for those not taking Pentox, Arginine alone may be of little use.  The new formulas available from bodybuilding;.com come with Arginase blockers, which, while not as effective as Pentox, perform the same function in opening the door to Arginine.  These professional formulations along with Horny Goat Weed would approximate the Pentox/Viagra/Arginine protocol on a less potent level.

- George  

Quote from: Ray on December 03, 2006, 11:41:13 AM
Hi

I'm looking for some feedback from anyone who has had the Horton-Devine method of surgery.
My curve is about 45 degrees and has caused some shortining.

Ray

I'm more interested in hearing about anyone who's undergone the Leriche procedure.

Frankie - get your butt to a doctor and get checked out. That sounds worrisome and in need of further evaluation.

Not9" - I think the posted quote from George is as good advice as I could ever give. The upshot is that the viagra is not to make you hard but to enhance NO production. That may cause better erections, but the main goal is to cure the Peyronies Disease.

Tim

Just one Quick question....has anyone on this forum had thier Peyronies disease go away? And if so...what was your situation ( i.e.  injury...no injury...unexplained ....how much curve...how long did you have before it got better) .  And what treatment did you pusue.  I have to tell you..as many on here know...ive not been too regimented with the VED. In fact...im not doing it. Cant get the hang of that thing. What i am doing is swallowing 1000 Mq of Vitamin A, and all other kinds of vitamins. and have sex...and using 100Mg + of viagra when i do. ( not that i need it...but hey...i figure if im taking it...might as well stay hard as loooooong as possible.  My curve seems to be the same as the pic i posted back on Oct. the Kink i felt is now just a dent/bend...no pain. Still about 30 degress.  I simply had to alter my entry position. It still sucks though....having a curved unit. I keep sayin...why me...why me.  I guess i should be happy i can still function normally ( with or without viagra)

Notnine,

It sounds to me like what you are doing makes no sense - at least to me. Why take viagra before sex if you get good erections?

The whole idea is to find methods that lead to improvement. Additionally, we have to find ways to accept and move ahead with our lives (and if possible, our sex lives). It seems like you may be doing a bit better emotionally, but that you are not really following through on the things that might help. Getting the hang of the VED is not too hard - and you may find that the smallest cylinder is too small for you - but one can learn how to do these things with practice and asking for help from those who understand how and have done it themselves. I am not sure, but I think I remember that you were starting out semi-erect when you started with the cylinder, and that does make it harder to get into it, and to passively inflate it with a vacuum. The VED is not to enhance or improve your erections at the time of using it (although we do it to help our erections ultimately by making them straighter). The whole concept of using the VED to mold your penis straight is really different than using it to get hard.

Persistence in paths that might help seems worth pursuing, no?

Tim

Hey everyone,
I'm a newly registered member and I have ready many, many pages of posts after finding this site recently.  Thank you all and Hawk for this amazing site! I desperately and urgently need advice from someone both knowledgable of the physiology of  disease and first hand experience with it. I'm scheduled for surgery (Nesbit procedure) one week from now (next friday) but am having second thoughts after reading about all alternative therapies (propionyl-L-carnitine, Arginine, Omega 3, VED, etc.).

**Do any alternative therapies provide correction for 'chronic' peyronies (I've had it ~7 years now)?  Do any of these therapies work on 'scar' tissue or just on early stage 'plaque'?

**What makes my situation so hard is that my health insurance changes at the end of the year to significantly worse coverage, if I'm going to ever have any procedure I can only afford to have it now. (In other words, if I canceled and opted to try alternative therapies, I would not have another chance for surgical correction.)

About me: I'm 20 yrs old, 45 degree downward, almost banana-like but with an easily identifiable point causing the majority of the bend nearer the base. No plaque can be felt by me or any docs though I just realized that I do have what feels like scar tissue on the bottom which I am sure is causing it (it doesn't really stretch like the tissue on the topside does). I was about 7" now 5.75"-6", and am in otherwise very good physical shape. I've not had sex so I don't know about the possiblity of penetration but would assume it's be possible (though I do fear that the pressure on the bend would eventually make it worse).  Before contracting peyronies, I had experienced literally only a couple/few  erections--all of which I know were normal and perfectly straight. Through very young foolishness hit myself while erect on the bed and have had the bend every since. (Nighttime erections are no where near as strong as they were before; however, my doctors say that blood flow is good according to test during my DICC procedure that stimulates an articficial erections for diagnoses.)

(I have seen 3 urologist including one at the Mayo Clinic. The mayo clinic dianosed with an ultrasound and DICC procedure to stimulate an artificial erection. I'm sorry to say but I haven't been able to be completely honest with the docs after a bad experience with the first doctor---so I don't know how this would affect their recommendations.  The very first urologist I spoke to was very rude and talked down to me b/c I saw him when I was 18 and he thought I was having sex too young--assuming that I had sex.  So, next I couldn't bring myself to tell the truth (erect trauma ~7 yrs ago) to the more knowledgable specialist he referred me to.  I told this 2nd doctor (very kind) that I've had the curvature 'as long as I can remember' so he is surely assuming this is congenital. Then I got a second opinion at the Mayo Clinic (he was so rushed for time that it flustered me) but could still only work up the courage tell them (especially the resident doing the history who was only about 6yrs older than myself) to tell him that I was confident it was from trauma (though realized after reading the papers that they assumed *flaccid* trauma not *erect* trauma).

So I dug myself a deeper hole and added the question of 'would they have recommended these treatments if they had known the truth?'  Both the later two specialists recommended the nesbit procedure but both also offered the possibility of waiting until I am in a relationship to see if penetration is possible.  I don't know if I could do this or subject myself to this embarassment.

As you all know, the true pain of this disease is psychological. Do I go through with the surgery??

  Welcome to the board! You've come to a good place... you will get solid information and solid answers here. But a word on honesty... everyone here appreciates your situation because we know first hand what it is like. We also know the priceless value of honesty with each other, doctors and our significant others! Relationships can be built with friends, doctors, women and all manner of people, but if the foundation is built on lies, half truths and misleading statements and so on, the relationship will degrade and crumble. We know how tough it is to tell the truth about Peyronies to doctors, wives, girlfriends and buddies. However, being honest is an absolute required element if you expect to get worthwhile answers. This applies to docs, forum members, girlfriends, all of them. With that said, be honest from this point forward with your doctors, close friends and forum members. Trying to mask the past and downplay your injury will confuse people who are wanting to give you valid options just as much as you want to get them.
 Many men are getting relief from supplements and specific prescription drugs, the vacuum erection device therapy and other methods here. Details of each are on the forum. There is no cure right now that produces quick straightness. Most of the things being done here require a committment of time and a stick with it attitude. It is possible to purchase a vacuum erection device (VED) or construct your own at a price almost anyone can afford. There are men who have posted praising surgery after having had it, and others who have had surgery and now tell those considering it to save it as an absolute last option.
 You have a tough decision to make. Whatever you decide, we will be here to stand by you to help you heal, surgery or not. If you decide not to have the surgery, we can help you choose a therapy that may help. If you do have the surgery, we do have some members who can discuss post-op situations.
 From your description, I think you could have sex with some minor position adjustments. 45 degrees is not necessarily a deal breaker in this department. More discussion here could help your understanding of this. You can produce babies, and they will be straight  
 Personally, if your bend is truly 45 degrees, I do hope you re-consider not having the surgery.
 You will get some more replies when some of the guys start waking up this morning.
 It's time to relax a little now. You have a bunch of friends here now who are about to chime in!
   

Hey man.  I guess I should be one of the first to help you out here since I'm in all basically the same predicament (19, considered and had surgery (nesbit)) only diff is that I actually do have congenital, but that won't affect much of what I have to say.

First off the docs looked for plaque.  I mean I approached my guy with the assumptions that it was peyronie's (I spead about 4-5 years researching this crap before I had the balls to talk to even my family doctor so kudos to you for quicker action).  He autmatically assumed it was peyronie's even though i told him that I had it since I could remember, but he looked and didn't find any plaque which was how i discovered congenital curvature.  It's possible that what you did 7 years ago didn't completely cause this.  Everyone has there moments when they are young.  Mine is def. congenital, but as I went through puberty it got worse and worse.  Which you would first make you assume peyronie's with developing plaque.  So don't worry about a misdiagnose from 3 sep. doctors based on what you told them.

2nd.  Doctor's are cut happy on young guys.  My uroligist (BTW what area do you live in?  I went to a jerk Uroligist who was highly recomended, and live within 10 minutes of a Mayo Clinic lol).  I'm 19 if I forgot to mention that.  Within 6 weeks of our first consultation he had me scheduled for a surgery.  I would wait.  I know how you feel money wise.  But you have 60-80 years to save up money, or to switch health cares again.  Once you have the surgery....there really is nothing you can do.  You can always decide later to do the surgery, but once you do....there really is no turning back.  I had the surgery it failed (90 degree curvature to the left, down to like an 85 degree curvature to the left....yay?).  And now I have a bad scar from the adult circumcision, two-three bumps on my penis from the nesbit, and I'm an inch shorter.  So if your biggest worry is what to show your girlfriend, no surgery will make it perfect and normal.

I have a few other things that I'll pm you with.

Peace

Explain your anxieties and tell him the whole situation.  If you don't you'll worry about it from now on.  If he is not willing to discuss it... cancel the surgery.  But, my bet is he will be happy to answer your questions.  Just be straight up with him like Angus said.

Also, write your questions down and check them off as you ask them.  I have had more than one doctor tell me they wish all patients would do this.  

Whatever is causing the curve, there is no 100% cure.  All the supplements are "unproven" as to their exact outcome.  We all feel we are getting at least some benefit from the things we do or we wouldn't do them.  But, no one can say if you do this for this amount of time it is 100% you will be straight.

BTW, I am not against the surgery.  I don't think anyone here is.  Just make sure you are ready.  Don't let anyone or anything rush you.  Its a decision you will live with a long time.

Liam

Thompson,

In addition to my answer to your original email a couple days back, I want to add that you must do the surgery ONLY if you decide it is the best option and you are willing to live with the outcome.  That is the ONLY reason to go ahead.  The fact that it is already scheduled is NOT reason enough to go ahead.  

If you are still a teen, have never tried any other treatment, and do not even know that you cannot have sex, these are indicators that it might call for more time to make this decision.  I also worry that you put little time into investigating the VERY BEST surgeons.  A Nesbit procedure is less complex than some other procedures, but only a "top ten" penile surgeon would ever cut my penis.  That would be even more true if I was 19 years old.

This does not mean that the surgery with one of your surgeons might not be a perfect success.  It only asks the question of whether here and now is the time to put all your money on the table and roll those dice.

There is one study I know of that showed some improvement with advanced (chronic) Peyronie's:

Oral propionyl-l-carnitine and intraplaque verapamil in the therapy of advanced and resistant Peyronie's disease (link to full-text, hopefully all can view this)

It compares PLC and verapamil shots to Tamoxifen and verapamil shots in people with advanced Peyronie's, and shows that the PLC treatment is superior and decreased the curve.

However it's a tough call.  On the one hand, you're very young and stand a decent chance of gaining improvement over time (though if it's already been 7 years, well, maybe not so much).  On the other hand, the downward curve is known to hinder sexual penetration worse than an upward curve, so even with success from the above treatment, it may not reduce the curve enough to be comfortable.  Given than postponing your nesbit procedure would make it much more expensive for you later on, if I were in your shoes I'd probably go ahead with the Nesbit.

I welcome the input of other users on this, if anyone's got something more encouraging to say!

I would like to add that you are only 20 years old. You are no where near the peak earning potential of your life and this change in your insurance is certainly not a final one. Since the Peyronies is already 7 years old you have nothing to lose by waiting. Even if you lose this insurance window, another will come again. When you are done school or are more gainfully employed or whatever... another insurance opportunity will arise. Don't be pressured by insurance, you have decades in which to find an insurance solution.
BTW: I have a lot of sympathy for all you younger guys with Peyronies. Without any intention of being patronizing, I have to admit it would have been a lot harder for me to cope with when I was younger.
---PJ

Thompson,

My advice would be that if you have ANY reservations about going through with the surgery, DON'T.  This is a case of an ELECTIVE surgery.  That means that not having the surgery at this point will not jeopardize your physical health.  So I would only go ahead with the surgery if you are SURE that that is how you want to proceed.

My opinion regarding how your first urologist handled your case is that if what you are saying is true, he acted in a disgusting and in my opinion unethical manner.  The role of a physician is to facilitate physical and psychological healing, not to insert their own moral judgments by way of off the wall accusations.  To instantly assume that the only way you could have developed this problem was through sexual activity is bizarre.  You were bold enough to tell him the truth and he kicked you in the face.  Disgusting.  I also think that the fact you had this experience should make you think twice about being rushed to surgery as well.

If I were in your position at your age, I would NOT even consider surgery until I had fully explored Pentoxifylline/Viagra/Arginine.  Because your problem began with trauma, I suspect that it is highly likely that the issue is in fact some sort of scar tissue, and I would try to find a urologist who would be willing to get you on a course of the above mentioned PAV protocol and see what happens.  The fact that you don't have an obvious plaque is something that I see as a good sign.  I really think there is a very good potential to cure this thing through drug therapy.  I wouldn't trade that possibility for an irreversible surgery that may end up leaving you as bad or worse off than when you started.

Thats my honest opinion.

- George  

Thank you all for your quick advice.  I've canceled my surgery.  Even though I found a surgeon who I am very comfortable with and who even took time to talk on the phone with me to discuss my reservations, I still couldn't get comfortable with the idea of surgery.  I've always believed in trusting my gut--and the idea of surgery without having the opportunity to try alternatives first b/c of an insurance deadline just made me feel almost sick to my stomach.  

I'm going to pursue George's idea of the Pentox+Arginine+Viagra since I've read good things about this in the forum. I'm going to find as much good info and research to give to my doc and see if he'll write some Rx's for those before the end of the year so I can still take advantage of my insurance in this way.  Then, I think I'll also simultaneously try heat therapy, plaque/scar tissue massage, and some supplements (propionyl L-Carnitine, full spectrum vitamin E, etc.).  I figure hit this with all I've got, all at once and see what happens.  I'll post something in the supplement forum once I decide and trade opinions with you all on those too.

One thing is for sure, I'm going to keep my uro involved so that if any of these treatments do work, he'll know a bit more for any other patients that may come along in the future.

Thank you all for taking the time to respond!!  All your comments helped greatly in making this last minute decision.  Thank you all.

And Hawk,  Your last line of advice, while seemingly obvious is soberingly true and actually helps put things in perspective. Thanks.

Quote from: Hawk on December 15, 2006, 08:34:49 AM
Thompson,

I want to add that you must do the surgery ONLY if you decide it is the best option and you are willing to live with the outcome.  That is the ONLY reason to go ahead.  The fact that it is already scheduled is NOT reason enough to go ahead.  

The previous exchange again reminds me how fortunate we are to have a forum like this.  Thanks Hawk!

Liam

Hey all. This is my first post here....I'm 20 years old and have had "bending" as long as I can recall. It bends to the right ~40-45 degrees and twists up. I mean maybe I could see myself having sex with it, but it's ugly and the thought of it making everything difficult just sucks. I can't believe so many people have to deal with this with little to no relief or hope out there. I'm 90% sure it's peyronies because I think I can feel a lump on the underside. It must've happened ~13-14 is the best I can figure....all I know is it's been totally stable for years. I have no memory of trauma or anything. In the past I was confused by it, and I've always been ashamed of it. Very conscious of hiding it in locker rooms, or showering publicly, etc. I remember I was in Japan and there was a group going to the ofuro, which are the public bathhouses, and they were trying to get me to go. HAH. I said I was too tired and refused multiple times until they gave up.

I've been back and forth and back and forth recently over whether to "come out" to my dad. He's an orthopedic surgeon, which doesn't really mean he necessarily has any knowledge of peyronies and the like, but he would be able to get me in to see a urologist, and maybe be understanding/supportive. So part of me thinks that....but then the other part thinks what's the point? For the doctor to tell me what I already know or less? That surgery is the only option and it's risky, and I can't afford it? I think I would be a good candidate for the nesbit surgery since the curvature in my penis is stable, there's not any pain and I do have a fair amount of length. And by all accounts it's not nearly as risky as other surgeries. Is that really something my dad would be willing to help me get? Or is he just going to tell me to live with it and then I'm back at square one + a lot of embarassment.

But it's hard because I'm so young....I've never had sex or been able to have a real relationship because I've always had this. I don't have any good memories to fall back on, just fear and loathing for the future. Some people will say oh it doesn't matter that much, or it's what's on the inside that counts, or girls will be more forgiving than you are. But what girl expects a guy she's into to have a deformed penis and will want to stay with them? It's almost like what's the point of everything else; you can be attractive in every other way but when it gets to that point it doesn't matter.

This whole post probably sounds really bitter but I think I have a definite right to be. I'm in love with a girl yet I can't let myself get close to her. I know sex is important to her and can I blame her??? It would be important to me too if I could imagine myself doing it. I don't want anyone to settle for me. All I can see is never being normal and never having the relationship that I want. My 21st birthday is coming up in a few days, and I've never been more depressed in my entire life. Sometimes I feel better, sometimes I don't. It is a disease, because it tries to eat you alive.

hello yami,by joining this forum and disclosing to its members,youve made the first step,if your fathers a medical professional and also your father,then you`ve got a huge advantage,of course he will help you! being open about the condition is the first step to the ever elusive cure,and their seems to be a plethora of treatments,no medical professional worth their salt would just tell you to live with it,sex is a little more important to us guys,but women are generally more concerned with emotional openess and emotional intimacy etc,it took me a good few years to figure that one out,i was 20 when this first ocurred and it wrecked my sex life for a few years,whereas now theres no stopping me!,theres more to sex than penetration,and for the majority of women, penetration is the least interesting part of sex,with a creative approach and a cheeky tongue there is no reason for you to hold back,dont forget that 90% of sex takes place in the mind

HI Yami,

I was young when I developed Peyronies Disease. My Dad was a doctor, and I had to really screw up my courage to talk to him about it. But when I did two things happened. A burden was lifted of being terribly worried about it, and he helped me understand what it was (I had figured it out by reading, but was unsure).

It will also help you to get their perspective. If they changed your diaper as a baby, I am sure they enjoyed the fun of watching you get an erection - sorry, there is no other way to put it. Having a son, and watching him play with his erect penis at age 10 months is a wonderful memory. But it will also allow him or your Mom to tell you if this is something that you always had, or if it is new.

Go ahead and sit down with him. If he is a very busy man, and does not easily make time for talking, then ask him to put other matters aside and to pay attention to what you are about to say - that will usually get someone's close attention. Good luck - you are starting down an arduous and long path (it's called life) but it is not that bad. Allow yourself to get close to a woman and to be honest with her - tell her (if it appears that physical intimacy could occur - and if you are not sure, ask her!). I remember Rico writing here that when he finally told a woman, she said "Maybe I can come over and kiss it better"! You never know...

Physically, I found I felt much better when, instead of trying to hide my condition, I alowed my partner to spend a long and relaxed time exploring my erection. Her loving examination and playing with me as she did so, finally allowed me to believe her when she said she loved me just the way I am. There is no reason that you cannot have a similar experience.

Tim

Thanks so much for your responses guys. I really can't thank you enough. I got really emotional after reading them. I think it's because when you carry something like this with you for so long and can't talk to anyone about it, to finally get feedback from someone, doesn't matter if it's on a message board or in person...well it was a bit overwhelming.

I've decided I am going to talk to my dad about this....I really have nothing to lose by doing so, and can only gain more info and maybe some more hope. I'm 100% certain it's Peyronies now. From everything I've read, from examining myself...there's the definite lump on the underside, and if not for that causing my penis to bend it would look completely normal. So it's not a natural curvature, or a case of everyone's penis being unique. Knowing this now, it boggles my mind why no one's found something that can get rid of that lump and just return your penis to normal...think about how well that would sell. It almost makes me more hesitant to leap to surgery since it's fixing the curvature but not really dealing with the heart of the problem and also shortens your penis....so I dunno. It's just something that's very hard to accept and deal with about yourself; you wish you could ignore it or it wasn't true but that isn't going to help anything.

Thanks for the advice on sex and relationships, it makes me feel much better and hopeful, and not quite so lost.

Quote from: Tim468 on January 05, 2007, 09:19:54 AMAllow yourself to get close to a woman and to be honest with her - tell her (if it appears that physical intimacy could occur - and if you are not sure, ask her!). I remember Rico writing here that when he finally told a woman, she said "Maybe I can come over and kiss it better"! You never know..

LOL! That's probably the most adorable response I can think of. I can only hope the person I'm with will be that accepting.

Welcome Yami, There are options other than surgery that might work for you.  Be sure to read this site over carefully including the supplements thread.  There is ongoing research with Pentox, a generic drug that combined with other substances is showing much promise in helping guys with Peyronies.  Some on this forum are now taking various combinations with this drug and reporting their experiences.  Also Vitamin E can be helpful as well and you can read about that too on the supplements thread.  There are numerous references to research articles that you can share with your dad as well as with any urologist he might refer you to.  Don't believe all the negative things that people including doctors say about Peyronies.  I had a urological problem that was devastating for me from the time I was in my early teens.  I was told by urologist after urologist that nothing could be done.  I finally, by accident encountered a young doctor who asked me why I hadn't had my problem 'fixed'.  I told him every doctor had told me there was no solution.  He immediately referred me to a doctor who indeed fixed it (at the age of 37 after having it mess up my marriage for five years).  What absolutely infuriates me is the fact that I just now happened accidentally across a mainstream urology website where someone posted regarding the same exact issue and was given the standard answer ... nothing can be done ... it just blows me away that so many docs have no clue as to the things that are going on in the major medical centers.  I am saying all of this to encourage you to relax and be patient and to learn all that you can about your situation (this site has an enormous amount of information!) and expect good things ahead.  There is a very good chance that surgery will not be needed.  And in my case, my wife was very caring and supportive, so there ARE women out there like that and those are the ones worth having a relationship with and if you want to find that type of woman, you need to be that type of man!

Wishing you the best,

George

This is a little off-topic considering the current conversation in this topic but I needed this to be announced.  This is to anyone else here who has congenital (born with) curvature rather than peyronie's (I know there's at least like 2 others lol).

Never get Nesbit.  I just learned this from another doctor.  Turns out I have what's called Corporal Disproportion.  Ie.  The two corporal bodies are different lengths  ( Now that I remeasured I believe before my surgery it would have been like one was 6 inches, the other was .  Nesbit is the quick fix for this, and can ruin you.  Apparantly it can cause major erection dysfunction if your issue is congenital not peyronies.

Think of  it this way.  If you have peyronie's it's like taking a straight spring and grabbing the left (or right whatever) and pinching it slightly causing curvature.  Nesbit will grab the other side to match.  it makes sense.  It works.

Now picture taking something that's naturally curved (I can't think of anything lol) and pulling on the outside part.  Its putting unneccessary tension on both sides of the penis.  Additionally it's fighting against your erection.  And every erection is fighting it, which can be disastrous (liek when my suture's ruptured causing major brusing and pain).

If you have congenital curvature (especially if its corporal disproportion like me) you want to do the grafting procedure....not the nesbit.  Just thought I'd throw this out there.

And if your new here...don't be dumb like me.  Go to at least 2 if not 3 doctor's for opinion's before allowing any knives near your little general.

Just thought I'd throw that out there because I hadn't really thought about it until my appointment today....and it has given me even more reason to regret that stupid surgery.  

Any thoughts?

Thanks for your post. It was really informative, and I personally learned something I did not know. Now, I am a doc, but not a urologist, and I would like to think that all urologists could tell the diffference between one problem and another - but that is not the case. Clearly not the case.

I think that any of us would benefit from going to more than one doctor for opinions, when a lot is on the line. Instead, though, many of us put a great deal of trust in our doctors and assume that what we want is present (experience, wisdom, thoughtfulness, etc). Moreover, it is very strongly inculcated in our thinking that authority figures should be obeyed, and so we defer to other's without critically examining what they propose to do.

I know a surgeon (I am thinking of an orthopedist) who is in private practice and is spectacularly good. I know academic physicians who are lousy and sloppy thinkers. It is likely that if you went to, say, Anthony Atala (formerly of Children's Hospital of Boston, and is now the Chairman of the Department of Urology, and the Director of the Institute for Regenerative Medicine at Wake Forest University) that you might get better care than if you went to the putz getting sued who we have been discussing in another thread (Atala is the one who is creating new penile tissue for injured penises, and has pioneered reconstructive surgeries for congenital diseases of the penis). But you never know - he may be great in the lab but shaky in the OR.

For IrishOCD, I would strongly consider going to a world renowned expert in the field of reconstructive surgery. I would strongly suggest to your HMO that your care was sub-par, and that they now need to help you get fixed up better (if they give you flak about going out of network). An attorney may help them see the light. I would consider going to Atala for an opinion, if I were you. More of the pediatric urologists (Atala does both adults and children) are doing surgeries than adult ones (IMHO).

Tim

Rabbit penis grown in lab
http://www.abc.net.au/science/news/stories/s851192.htm

Atala's work and move to Wake Forest
http://www1.wfubmc.edu/News/NewsARticle.htm?ArticleID=30

His company is also cool
http://www.fastcompany.com/magazine/103/open_6-atala.html

Tim, I know that there are some doctors out there that are just incompetent flakes.  And I also know that there are a few out there who are real geniuses.  But what I think we tend to forget is that doctors are people, just like we are, and many of the mistakes and misdiagnoses and ill advised surgeries, etc. are just that, innocent mistakes on their part.  I think we have to assume that they have all the best intentions and are trying their very best to help us but they also have all the limitations that come with being part of the human race.  I could give you a long list of doctors that have failed me, and in most cases, I would have to blame myself as much as I would them.  You know there is a new theory coming out in terms of how to get the best possible medical care.  And it seems to find that there is a better approach than even the second and third opinion approach.  And that approach is, when it comes to difficult things like this, to 1) try to utilize group practices where the docs in the group talk to each other.  I have personally been in a situation of inadvertently overhearing three specialists in a group congregating in a hallway to discuss the options for one of those specialist's patients.  The brainstorming that went on in that short session was awesome.  I am sure that that patient got much superior care as a result of his/her specialist's willingness to subject the heavy questions to group think.  And 2) It is really a good practice on the part of the patient to think of all the various specialists that might be involved in their case.  In other works, not to limit their 'second opinions' to simply the major specialty, but to make sure their doc is getting 'second opinions' from all the areas of medicine that touch on their particular situation, including the psychiatric side, and the upstream academic side.  And 3)  In the end make sure any delicate procedure is done by a doc who does a LOT of those procedures, the more the better.  To me, the most dangerous doctor out there, no matter how brilliant or skilled he or she might be, is one who operates in isolation and will not tolerate being questioned on a decision.  Those are my thoughts on the issue.

- George

That's good advice George.

To anyone thinking about surgery to correct this disease, don't do what I did.

I had a curve to the left since my early teens. It was always on the back of my mind and kept me from dating in my early years. Every thing worked fine, but it was always in the back of my mind.
In 1997, before the internet was popular, and before all the wonderful informative sites like this, the other alternative was the Yellow Pages...mistake number 1. Don't laugh, that's actually how I found my doctor. I should have left well enough alone. Everything worked, and my girlfriends over the years never complained.

So, in 1997, I found and visited a Urologist in the Boston area. In the hub of medicine, I only visited and spoke to one doctor...mistake number 2.  Anyway, this doctor tells me the Nesbit procedure is a peace of cake, what a mecanic would refer to as "Changing a tire." These were his words. He had plenty of placks on the wall and he'd been in businees for years, so, I scheduled the tire change...mistake number 3.

In 1997 I was 30 years old. I had the Nesbit procedure. At home after surgery, I had sleepless nights due to the pain. I felt two different lumps in two locations. One at the base on the right side, and one halfway up on the right side. The surgery was done on the right side to pull to the right.. as the curve was to the left.
This was a surprise as I thought he was only peforming the Nesbit at the halfway mark, not at the base as well. So, after speaking with him, he advised me that the lumps and the pain in two spots were normal because I needed it in two locations, not just the one. Fine, as long as it works I thought.

To make a long story short. I originally had a curve to the left, now I have a curve toward the right. Only now, I'm an inch shorter and have lumps, or what I believe are blood restrictions on the right side at the two locations where he performed this procedure {One halfway, and one at the base of the penis}. Not to mention obvious scars. He removed a total of two centimeters of tissue. One centimeter from each location.

When I went back to his office after a few months of recovery. He told me that he took out a little too much, but could perform the Nesbit on the left side and pull it back the otherway. I wasn't that stupid.  

At this point I started researching specialists and found Dr Tom Lu from UCSF. I wish I originally found him.
He expalined that to try and correct what I had done was risky and could cause erectile dysfuction. {I had suggested a graft over the two locations where the tissue was removed}. He explained that the safest way would be to peform the Nesbit on the left side to correct the curvature. That wasn't what I wanted to hear, and haven't done anything since.

So here I am 10 years later, searching for any new graft materials or other techniques to correct what the original butcher did. I still have the two lumps during erection where he "Took out too much". I'm pretty sure I can feel the stitch still in place. I believe he used the non-dissolving type.
I'm 40 years old. Every thing works, but I believe this restriction is interefering with blood flow, as erections don't last as long they used to. I feel it will get worse with age. To complicate matters, the hospital closed down, and the original surgeon passed away. I wouldn't know where to start to locate my surgical records. 
I know this isn't a forum for Doctors/Surgeons. Just wondering if anyone has had a screwed up Nesbit procedure repaired succesfully, or know of any specialists performing corrective surgery for another surgeon?  I hope to eventually correct what the first surgeon did, not simply have the Nesbit done on the opposite side.

Thanks,

Brian

Hi Everyone,
    I went to my uro Today and he informed me that there was something new.
I was ready to do the surgery and he informed me of a new study with a new type of series of injections. I ask if this was the injections that were tried in the past that didn't work. He informed.me these injection were used in the past for scars on hands and fingers like when someone that cut and scared were the finger wouldn't straighting out they used these injections to dissolve the scar tissue. His theory is if it works on scars it will work on the plac This study starts around march of this year. I plan to try it and give you the updates on it. I have high hopes for this to work. This Dr. feels really strongly that this will work over time and several injections.
JTL4661

Quote from: jtl4661 on January 31, 2007, 05:13:42 PM
Hi Everyone,
    I went to my uro Today and he informed me that there was something new.
I was ready to do the surgery and he informed me of a new study with a new type of series of injections. I ask if this was the injections that were tried in the past that didn't work. He informed.me these injection were used in the past for scars on hands and fingers like when someone that cut and scared were the finger wouldn't straighting out they used these injections to dissolve the scar tissue. His theory is if it works on scars it will work on the plac This study starts around march of this year. I plan to try it and give you the updates on it. I have high hopes for this to work. This Dr. feels really strongly that this will work over time and several injections.
JTL4661

any more details? links?

JTL,

Injection Study?  By all means, fill us all in.  I'm sure that there are MANY on the board who'd be interested in a new study starting up.  I know that they could get lots of volunteers from our members.
What is this wonder drug, and where are the studies being done?
You should also post any replies over in the 'Developmental Drugs' forum.