PEYRONIE'S TREATMENTS - Questions, Plans & Remarks

[Worried Guy]

Should I be concerned about using Pentox and a VED unit together?  The VED unit lists blood thinners as not to be used in conjunction.  

[George999]

I think the consensus around here is that you should be *aware* rather than concerned.  If you pump hard enough to redden yourself, you are probably pumping to hard.  Pentox is not nearly as much of a problem as coumadin.  In fact nothing really compares to coumadin when it comes to blood thinner risk.  You see sometimes old people with purple skin ... thats usually a result of coumadin.  Pentox doesn't have these issues, neither things like aspirin or fish oil.  So just use common sense and I think you will be fine.  - George

Should I be concerned about using Pentox and a VED unit together?  The VED unit lists blood thinners as not to be used in conjunction.  

[ComeBacKid]

You want to check for tiny red dots if your using a blood thinner and the VED, if you see this, quit pumping.  I would just take pentox for awhile, give it some time to work and soften your tissues if it is going to. Take pentox for nine months, then pump for 90 days, then I would go back on pentox again.  I'm working on my own treatment plan.  I definitely think from my own results 6 months is the minimum you want to take pentox for.  

Comebackid

[pvpey]

Much has happened. Still waiting to hear complete answer from Cardiologist regarding VED usage coupled with Coumadin (Timm Med Rep expressed concerns while administering use instructions, although instructional use showed no problem and worked great, almost too good). Pentox seems out of the question for me.

Although detailed letter written to Cardiologist labled "confidential & private", a nurse calls me back with letter in hand basically telling me that Pentox cannot be substituted for Coumadin in my case, but has no clue as to use of both simultaneously (from what I understand a no-no) Also no mention of VED usage and possible hemorrhaging in penis. To be resubmitted to Doctor or perhaps a one on one talk to be held. I'm still waiting for call.

Anthem Blue Cross denied coverage of Cialis as not necessary in dosage prescribed (read new thread), but approved 8 tablets per month. Had those changed to from 5mg to 10mg as I am supposed to take 5mg daily and by cutting in half, and begging primary Doc for samples, with any luck I won't have to buy many offshore fill-ins.

Insurance still hasn't covered any of the 15% Verapamil gel, but I gotta say one thing, that being since I personally spoke with the compounding pharmacy and only apply it to the effected areas, in my mind it has shown a difference. My curvature seems less, but then again that also could be attributed to recent great oral sex with new GF.

And life goes on.

[stx5m]

Hi everyone,

I have had peyronie's about 11 month's now. I am 23 years old (22 on incident).

-It started with slight pain in the shaft for about the first 8 and has started curving slightly during the last 3, -pain is still present
-I went to a uro about 6 months ago who told to me wait and if I see curvature come back/start taking vitamin E

Treatment Plan (daily):
Yasoo Vitamin E 400mg (2x)
Fish Oil 1200mg (2x)
L-Arginine - 1000mg (3x)
Acetyl L Carnitine
CoQ10
Vitamin D3+VitaminK

Soma Correct VED

I am going to go back to my uro to ask about vepramil and pentox, but is there anything else I am missing??

[success]

hello...my story:
i developed peyronies about 3 or 4 years ago. it started with a slight pain on the side of my penis getting an erection. that went on for about a year until i noticed a lump . i went to a urologist and he suggested it was peyronies disease...had never heard of it before, i was concerned about cancer. my penis was not deformed at this point but shortly after it started to bend at the top just under the glans...over a few months it progressed and my penis became much shorter, severely curved towards my body and contracted at the base...it was gross. also painful. i couldn't look at it. after some time i was able to masturbate again and slowly i got used to it being so deformed. i would not consider having anyone look at it, let alone consider having sex with someone. i never had a problem getting an erection.
a few months ago i started taking DHEA...25mg every other day. i would also make myself have very prolonged erections before ejaculating...massaging my penis and taking a long time to come. i began to notice over the past few months that my penis was not as severely deformed and slowly it has returned to about 90% of it's previous size. it is again nearly straight and the the contraction at the base has almost gone completely. also the original lump (about the size of a lima bean) has gone.
i do not know if the DHEA is responsible for this reversal of my situation...i only know that the timing is related and i will continue to take the DHEA.
i feel very happy about my penis being normal looking again.  

[George999]

Much maligned DHEA can really do wonders for people IF their DHEA is low.  The problem is that it can also make things worse IF their DHEA is normal.  So, while it is obviously helping you, a good idea with DHEA is to get tested and find out what your blood levels are.  A lot of guys are REALLY deficient and the right amount of supplemental DHEA could likely do wonders for them.  - George

[cr]

i have not been diagnosed with this disease cuz like many others wont go to a doc but abt 8 mo ago when having sex i noticed my penis being xtra hard during sex with a small pain abt as much as gripping hard on ur penis more of a turn on than pain abt 3-4 mo ago i was lying in bed waiting on my wife to get out of the shower n got erect so i stroked it a few times n noticed the girth in the middle of shaft was gone was weirded out didnt say anything to the wife all was good no problem with erection but as the last 3 mo the girth has not come back it seems shorter n now is flexible below the head when inserted im ashamed,depressed,worried n just plain mad will it get worse? will testosterone treatments help? my penis has no lumps its like someone put a rubberband around the shaft. abt a year ago a friend gave me a few cialis to try all it did was gave me a severe sinus headache with no performance enhancements tried another a week later the same i am 38 havnt had morning wood for abt 6 yr have been very sexually active up to this point is this jst age catching up to me or the end of sex? HELP

[jackp]

CR

No it is not the end of sex.

First you need a complete urological work up by a Male Sexual Function Specialist.  A general practice urologist does not have the skills you need. There are only 3 or 4 great doctors. You most likely will have to travel to see one.

You need to be on a daily VED therapy for your penile health. They are posted in the  VED thread. Any questions on the VED let me or Old Man know.

Testosterone replacement therapy (TRT) is helpful in lots of ways if your levels are low. It will not help peyronies. Your regular doctor can have your blood levels checked. You want at least your Total T and Free T checked. The Free T is the most important and needs to be at or above 60% of your lab range.

You are not alone. This a great place for support.

Jackp
http://jackp-penileimplant.blogspot.com/

[stx5m]

bump

[George999]

Looks good enough, but the big missing element, of course, is Pentoxifylline.  - George

Hi everyone,

I have had peyronie's about 11 month's now. I am 23 years old (22 on incident).

-It started with slight pain in the shaft for about the first 8 and has started curving slightly during the last 3, -pain is still present
-I went to a uro about 6 months ago who told to me wait and if I see curvature come back/start taking vitamin E

Treatment Plan (daily):
Yasoo Vitamin E 400mg (2x)
Fish Oil 1200mg (2x)
L-Arginine - 1000mg (3x)
Acetyl L Carnitine
CoQ10
Vitamin D3+VitaminK

Soma Correct VED

I am going to go back to my uro to ask about vepramil and pentox, but is there anything else I am missing??

[George999]

I can only agree with Jack.  Only a Peyronie's specialist can deal effectively with Peyronie's.  Most general urologists (with a few exceptions) are useless when it comes to treating Peyronie's.  The breakthroughs on Peyronie's treatments are relatively new and only doctors abreast of latest treatments are aware of them.  That would be urologists specializing in Peyronie's or sexual medicine doctors who take Peyronie's seriously.  - George

[newguy]

I agree with George. It may be that you're having trouble getting a pentox prescription? I would advise you to go the pentox route if at all possible.

[fubar]

I have noticed lately people feeling negative about pentox.Thinking after three months or a week they should notice positive results.I have been taking this for over a year now and it takes time! Really your junk has been in a traffic accident and your dent pullers are what they are.Pills, ved what ever is your choice for therapy.

I have seen good changes through the course of my treatment.I have seen deformity change even move from an existing point to several centimeters away.Nothing I have chosen as a treatment has caused further damage.Over all I feel pentox has made my condition better.

Fubar

[restore]

I agree with fubar, pentox does help but it takes a very long time.  I'm on 400 mg three times per day for about 6 months and my plaques have diminished somewhat ( they're more difficult to locate them now by feel when flaccid), and are softer.  My glans is starting to be more full and engorged with erection, but still not at the Pre-Peyronies state.  I'm cautiously optimistic.  Some of that could be the higher quality erections given by the low dose daily Cialis.  

I go today for my 3rd visit to my current urologist who specializes in this disease.  I found him after two previous Uros.  The first Uro misdiagnosed me as a fractured penis and said to just abstain from sex for two weeks, no treatment given.  (found out later that fractured penus is a surgical emergency and not the same thing).  The second Uro I went to had graduated from the Mayo Clinic so I thought he'd before knowledgeable.  He recognized it as Peyronies, and said vitamin C and we can watch how it progresses.  He had never heard of using Pentox.  

My point is stay connected to a Peyronies specialist because that person will be current on the latest drugs and therapies first.  

[restore]

I agree with fubar, pentox does help but it takes a very long time.  I'm on 400 mg three times per day for about 6 months and my plaques have diminished somewhat ( they're more difficult to locate them now by feel when flaccid), and are softer.  My glans is starting to be more full and engorged with erection, but still not at the Pre-Peyronies state.  I'm cautiously optimistic.  Some of that could be the higher quality erections given by the low dose daily Cialis.  

I go today for my 3rd visit to my current urologist who specializes in this disease.  I found him after two previous Uros.  The first Uro misdiagnosed me as a fractured penis and said to just abstain from sex for two weeks, no treatment given.  (found out later that fractured penus is a surgical emergency and not the same thing).  The second Uro I went to had graduated from the Mayo Clinic so I thought he'd before knowledgeable.  He recognized it as Peyronies, and said vitamin C and we can watch how it progresses.  He had never heard of using Pentox.  

My point is stay connected to a Peyronies specialist because that person will be current on the latest drugs and therapies first.  

Good News!  My urologist was very impressed with how I've improved.  I had been noticing less curvature, fuller erections and difficulty locating by feel any of my plaques while flaccid, but was cautiously hesitant to accept it.  He examined me and stated the plaques were barely palpable, and he looked at pics in the erect state and compared to where I was.  I'm straighter, fuller and noticeably better quality erections.  I still have some shortening of length though.

He was very optimistic that we should continue with the pentox and cialis and watch for more resolution.  I mentioned how I read that several are now taking 800mg and he said he was not aware that Dr. Lue was doing that now.  He wants to wait and check that out first before he ups my dosage.  

[charlie44]

I was diagnosed 5 months ago, and have scarring on both sides about 1/3 the way up. I would say the scarring runs about an inch long lengthwise at this point and is pretty equal on both sides. It was worse on the left, but then the right side got worse, and now it is relatively equal scarring. Right now I have a couple millimeters hourglassing on both sides for about an inch lengthwise, and the downside is that it compromises the structural integrity of an erection. Right now I am on Pentox for treatment.

I appreciate any insight from others who have hourglassing....what their treatment is/was, and did you see improvement over time?....any insight at all around this type of condition is greatly appreciated! Thanks.

[0x5555]

I'm in the same boat as you, roughly 5 months in.  I've been abstaining from sex and hoping this will resolve.  Like you things just seem a little softer than they used to.  

I am not currently on pentox though I hope to get a Rx soon.  Do you think it has helped you at all?

Also curious to hear from anyone else who has this issue.

[charlie44]

I have been on Pentox a little over two months and it has not helped yet. But from what I gather on this board, it is a long term effort, so you might not expect results quickly. I am going back to the doctor in late November, so I will update what he says after being on it 3 1/2 months by that time.

However, I see where you are abstaining from sex.....I think the opposite is what you should be doing. Both urologists I have seen, and one is a Peyronies expert (Dr. Culley Carson) both encouraged getting erections and along those lines, having sex. You want to keep the penis stretched and used.

Instinct is to abstain, but the reality is opposite....I was advised to get an erection every two days to stretch the penis.  

[0x5555]

I was doing that for a while but I think it has done more harm than good.  I still have discomfort when I get an erection so I'm still abstaining.

For others reading this, if you have any discomfort don't get an erection or have sex.  That's my advice.

[fubar]

Stay on pentox!

Fubar

[ek]

I had a diabolical case of hourglassing, and I've detailed my journey under the Verapamil topic (Main Menu).

Was on Pentox for about 6 months with little/no improvement.   My doctor then started me on VI and that was the ticket.  I had 4 scars and 2 are completely gone.  The other two are about 80% gone.  VI isn't for everybody, but I'm one of the lucky ones I suppose.  VI's have really worked for me.

Regarding sex:  yes my doctor recommends it too, but with a caveat.  Keep it light, the rough stuff may stimulate more scar tissue to develop.  But overall getting an erection is a good thing.

[charlie44]

Thanks Ek....I have been on Pentox for almost 3 months....I expect my doc will go a little longer than maybe look at VI injections....great to hear it's worked well for you. Also, I agree, good to keep having sex, but be careful.  

[KAC]

It makes some sense to me to abstain from sex if you are in pain--and especially if it sex seems to aggravate or worsen the inflammation.  But I can't imagine it would be good to avoid getting erections.  That seems like just part of the body's way of staying healthy.  Not that you can always choose either.  Does getting an erection seem to increase the inflammation?  

[0x5555]

Yeah, I can almost feel a tearing sensation when I get a particularily strong erection.  As soon as that happens I'm like NOPE NOPE NOPE and try and walk it off.

Likewise when I wake up at night with morning wood.  Very uncomfortable and I basically have to picture unsexy thoughts.

[Henry]

Hi all, sorry to make another "do I have peyronies disease" post, but I'm not sure where else to go at this point. To summarize at the beginning, a urologist is confused about what's going on and just suggested that maybe it's Peyronie's. I'll try and post as many of the details as I can:

I'm 25 and married for a few years, otherwise perfectly healthy, in fairly good shape (6"3 190lbs). About four/five months ago after returning from vacation, I started having pain specifically at the tip of my penis. It was almost like a burning with redness around the head (specifically near the opening) which would get worse during an erection. It would hang around for days and sex was very painful so my wife and I refrained. Also, after sex, my penis would feel sore for a day or two afterwards despite not really doing anything serious.  I immediately went to the doctor, she did tons of tests for STDs (even though there was really no chance of that), did a prostate check, blood sample, the works. Initially we thought that maybe because my wife had Ecoli and a UTI while we were away that maybe I had picked something up from here. She put me on antibiotics for a few weeks, which really didn't help. All the tests came back negative, everything was fine.

She sent me to a urologist, who pretty much checked me out for two minutes and gave me a steroid cream for the irritation. When that did nothing, I went back and he threw up his hands having no idea. I quickly found another urologist with (seemingly) better credentials. He checked me out again and said he didn't feel anything abnormal, but put me on two weeks of Vibramycin antibiotic. After a week, I was thinking this was getting better, but a few days after I was through with the medication the pain/burning seemed to come back. (BTW, this pain starts the moment I'm fully erect before any interaction at all). Went back to the dr the second time, he though that maybe it was just a stubborn infection, gave me two weeks of antibiotics again to be taken with a bunch of ibuprofen. Again, I thought maybe it was getting a bit better, but really it never went away. This last time, he checked me out again, suggested that perhaps it's peyronie's, asked if I have a bend in my penis, and told me to take more ibuprofen w/o the antibiotic (2 capsules 3x a day for a week) and to let him know what happens.

So. After spending the last 48 hours reading about/freaking out about Peyronie's and wondering if this what's happening, I'm a little lost. There is a slight bend in my penis to the right, but I'm not convinced that this is new- it's noticeable but not very dramatic, and I'm fairly sure it didn't just happen. I did mention to the Dr that I felt a tiny lump or something like that which felt like it was tender, but to me it feels more like a vein or something that hardened a little or ruptured. Neither urologists felt it. Also, in reading all this material about Peyronie's, I'm not seeing anything at all about a burning sensation near the tip of the penis or redness. Also, I don't really have any pain in the shaft of my penis during an erection, it's almost totally inside/around the head, though as mentioned about sometimes after intercourse I've felt sore.

A few other little notes:
I haven't had any discharge or anything like that
I lost about 25 lbs earlier this year from diet and lots of exercise, that's about the only body change I've had in the last year.

I just don't see how my symptoms are related to Peyrone's, but I'd really appreciate any suggestions/comments from the folks here. Thanks.

[jackp]

Henry

Sounds like you need to go to one of the great Male Sexual Function Specialist.

I am no expert but it sounds like you may have a nerve pain. Nerve pain is usually treated with neurontin. You will have to get your doctor to write you a prescription for it.

Jackp
http://jackp-penileimplant.blogspot.com/

[0x5555]

Deep breath.

If you are freaking out about it being Peyronie's you should try and find a urologist who specializes in it.  Can you post your location, someone here may be able to let you know if there's someone nearby who you should talk with.  Since it's not a common problem, especially in younger men, you really want to see someone who has expertise so they can give you a definite yes or no.

If you have pain of any kind during erections I highly suggest that you refrain from sex or getting erections.  You may or may not have Peyronies but pain is your bodies way of saying 'something is wrong'.  Maybe you have some minor tearing inside your head.  If you agitate this over a period that's probably not good for your body and could lead to more serious issues.  I speak from personal experience - I kept wanting to check to see if the pain was still there (before my condition got to where it is today) and I'm pretty sure I did more damage than I needed to.  Not worth risking your next 30 years over a month's worth of abstinence.   IMHO Pain == bad.

From what you've posted it does not sound like Peyronies to me, but I'm not expert by any means.  There are people on this forum who know much more than I do, and then of course doctors.

Have you had an ultrasound done?

[fubar]

Both of these guys are giving good input and listen to them.From what i read earlier today from your post it did not scream peyronies.To me it sounded more like rough sex or a mild infection.

Through out my life i have experienced burning or tinging pain in the head of my penis.Believe me you will know peyronie's if you have it.So relax have a good nights sleep. If you have no visual deformation and all i .the way it was yesterday no worries brother.

Fubar

[Henry]

Thanks everyone for your comments, I do feel a bit better. I've mostly been concerned considering this irritation has stuck around for so long and resisted all those antibiotics that maybe this was the last option. I live in virginia, so perhaps if this sticks around longer and I'm not getting any new suggestions from this second urologist I'll seek out someone who knows more about Peyronie's just in case.

Thanks again.

[0x5555]

Just a word of advice - we are not doctors.  It may very well be Peyronies.  You need to see a urologist who really knows about the disease to give you a confirmed yes or no.  Feel free to use this board to find someone as there are quite a geographically diverse set of people who can likely point you in the right direction.

Best of luck!

[soroxas]

Hey guys.

Im now 23 and have had Peyronies Disease for 3 yrs. its been in the same phase for a while. have 3 different scar tissues on the left side. been to the best urologist my city offers and pretty mch he gave me verapamil about 1 and a half yrs ago. ofcourse it didnt help and thats all he suggested. takes me 6 months to see him for 10 minutes and the doctors dont really care. now im a virgin other than oral sex. have tried to have sex with 10-12 different partners over the course of my peyronies and have failed and just caused embarrassment for myself. lost the girl i fell in love with about a yr ago. she tried to cope with my problem but pretty much one day she had enough of me not being able to have sex and she left me and havnt talked to her since. i have a really good career job and have a year left to get my degree with a 3.7 gpa. have resorted to smoking weed and now selling it because i dont give a crap anymore. i suffer from depression as well and for the last 6-12 months until abut 2 months ago i contemplated suicide every other day but couldnt do it. no one knows other than my best friend that i finally had the balls to tell a month ago and our friendship is slowly vanishing. all i do now on my spare time is lock myself in my room because i hate everything about my life. i lost all motivation in life and am wanting to drop out of university because i really dont care anymore and dont want to try. i just really dont see a point in things anymore. im honestly a really good looking guy with a nice and upbeat personality that i have come to hate because all it does is get girls wanting me all the time when i try to avoid them. ive had to decline many sex invites from females and all my other friends are always wondering now why im avoiding girls and not getting laid . i dont know what to do anymore in life. where to go from here. im obviously never gonna be able to have sex. never have children and never live truly happy. i lost all hope in religion. used to be a religious person but not anymore after how life f'~c<+d me. all i did was wake up one day and Peyronies Disease appeared out of the blue. since then everything else in my life has fallen slowly. i even told myself after researching and consulting doctors that ill probably slowly fade away which ive done as expected. i tried my best to be happy and in doing so got a good job and good grades. but i dot care anymore. why do rapists and murderers have the right to keep their manhood while me and others that are truly good people have to suffer. and although we suffer we still try to be good people and do the best in life. but still my Peyronies Disease exists and wont show any signs of improving. i cant even look myself in the mirror anymore. and the worst part about having Peyronies Disease is i have a never give up mentality. im always number 1 in everything i do still. this just sucks because im fighting a fight i know i cant win but still will fight it because thats who i am. i dont like to lose. but all men have a breaking point. and i reached mine a year ago and since then i have been in a state of depression. i really dont know what to do anymore. lost contact with my mom and father . fatehr when i was 10 and mother when i was 18. im the blacksheep of the family that had to do everything on my own. im proud of myself for getting to where i am today. but i need my manhood and pride back. my life back.

please someone if u can help let me know! im done

[George999]

soroxas,  You are NOT "done", you are just imagining that you are.  At 23, you have a LONG life ahead of you.  Just a few years ago, there was little hope for Peyronie's patients.  That is not true today even though most docs don't seem to realize that.  Just pay attention to how you deal with the rest of your life and stop concentrating on Peyronie's for a while.  If you have only tried Verapamil, topical Verapamil at that, you haven't even started with the most promising treatments.  But BEFORE you even start other treatments, you need to get a handle on your life and your emotions.  You need to be able to have a relationship with a female without associating it first thing with "sex".  You need to be able to tell a female that you want to wait for a while before stepping into sex and marriage instead of seemingly being cowed into validating your "manhood".  Any woman who truly loves and cares about you as a person will happily accept you as you are.  And you need to be willing to do the same with her.  In the mean time you have LOTS of time to deal with the Peyronie's issue.  ESPECIALLY at your age, you need to be in the care of a major league Peyronie's specialist.  I really don't know if there are any in your neck of the woods, but there are some in Toronto.  If I were you, I would start on this problem by making a phone call to the top Peyronie's doc in Toronto and ask HIM if he can recommend someone in your area.  If not, I would hop on an airplane and connect with one of the docs in the Toronto area.  It is usually a matter of seeing them once and they can work out a treatment strategy and get you on that with a local doc in your area who will be happy to go along if the instructions come from a world class expert.  And if that doesn't produce results, it will at least most likely keep things from getting worse.  And I can all but guarantee you that there are new and much MORE effective treatments in the pipeline that will be available to you within the next five years.  So stop wallowing in pity on yourself and pull your life together.  The world is NOT a nursery where we are pampered like babies.  We all have to grow up and take these challenges in stride.  So stop hating God over one of those things that just happens to come along, because that attitude is not helping you to overcome this, it is just making you bitter at life and if you picture yourself as a victim, you will become one.  Instead try to imagine all the other things you can do with your life while you are waiting for a short few years to see progress with this issue which will SURELY happen if you allow it to.  But you have to be willing to step out and help yourself on this issue.  In the meantime, if you haven't already done so, give Bill a call at 416-988-6263.  He works at PeyroniesCanada.org in the Toronto area and can likely give you some additional advice and encouragement.  He has connections with some of the worlds top Peyronie's doctors who practice in the Toronto area.  All the best to you young man, you have a bright future ahead.  Don't squander it by wrong decisions now resulting from unnecessary depression.  You are not facing terminal cancer or a life threatening chronic illness.  What you are facing is something that is VERY treatable.  There are a lot of guys around here who have overcome this years ago when there were far fewer options AND who have managed to have happy and fulfilling relationships through it all.  So get a life.  And I DON'T mean that sarcastically either.  Just do it.  - George

[Skjaldborg]

Soroxas,

I got this at age 29 during which time I entered one of the darkest phases of my life. I know what you are going through. The only way out is up and you have to fight every damn day to make yourself better. Ask one of the urologists you went to for pentox and get on it. If you are having erectile function issues get on daily Cialis as well. Get out there and exercise, quit smoking weed and keep hitting those books. Don't give up. This disease is tremendously awful but in dealing with it you will find strength you didn't know you had. The quality of a man is not defined by what he's got below the belt but rather the courage in his heart and the boldness with which he faces adversity. This is what men do; we fight best when things look hopeless.

By the way, my wife and I conceived our beautiful baby girl while I was on pentox and still in pain from the disease. PM me anytime of you have questions.

-Skjaldborg

[0x5555]

What treatment options have you tried so far?  Just the Verapamil? Have you spoken about this to anyone close to you other than your best friend - do you have any family that can help?  Is there someone you can talk with who can help you get all the info you need and find a good doctor who will work with you to figure this out?

The doctor you're seeing sounds like an a$$hole.  Maybe he's well respected but if he's not giving you more than 10 minutes and doing everything he can to help you (physically and mentally) find someone else!  Bang down doors, let them know how much this is affecting you and how helpless you feel.  Get people to pay attention to how bad this is.  Medicine is not a science, it's much more of an art and it's important to find someone who really knows what they are doing and isn't just a walking encyclopedia.  A doctor who gives you Verapamil and nothing else isn't doing their best to help you.

As far as letting your life go down the drain - I hear you on that one.  I'm currently really bummed out and depressed.  Haven't gone to work for almost a month, don't really do much of anything all day, don't really want to talk with anyone.  For me I know this is just a temporary thing - I just need to get this out of my system and then like Skjaldborg says pick up and keep fighting.  In your case I'd suggest doing what you need to do to come to terms with this and then pick up and start figuring out what you need to do to get on with life.  BTW if you are thinking of suicide make sure you talk to someone - a hotline, a friend, anyone.  As bad as things seem you can't predict the future - don't give up hope that you will one day be able to figure this out.  I suspect it's the lack of hope that this may get better which is getting you donw - and your doctor really doesn't seem to be helping.

If you have a 3.7 GPA have you thought about med school - maybe become a Urologist? :-)  

[Iceman]

soroxas - get on:

1) pentox
2) ubiquinol
3) VED

start now and you will see an improvement - george 999 is right - i was real depressed - flew around the world to see dr leu in SF - just take the meds and if you have ED get on some cialis  - you will get better - pentox is a good thing to start with -  

[mike67]

Soroxas
Speaking as a fellow Canuk , please don't despair. You have been extended a great deal of support and good advice from George , and several others regarding treatment options . Once you begin actively treating the condition , your mental attitude will vastly improve. I felt as you do last summer when my Peyronies Disease bend became apparent. By searching and posting here , I began  suppliment and VED treatment. I  feel good knowing that  I am doing something about it.
Now as George recommended , Bill at Peyronies Canada is a great source of information. As a matter of fact I just now spoke with him. In the meantime I would get through to Dr. Lee's office and see what is required to get in there asap.
Pls feel free to send me a PM ( personal message) if there is anything else I may be able to do for you.
Mike67

[Jut]

Hi all, I'm just diaganosed and have 2 lumps (confirmed by ultrasound), pain when erect, a left hand bend and no trauma to explain it and have finally got an appt to see a uro. Problem I have is that the only Peyronies Disease specialist in my state(Perth,Australia) has just retired so i have gone with a uro who i've been told is good and who promises to refer me to someone else if she can't help me. What i want to know from the experienced people here is what i should ask and what i should be expecting from a uro who has at least had some experience with Peyronies Disease. I'm flying blind at the moment but want to be as proactive as i can and intend to research drugs like pentox and viagra as much as i can in the next couple of weeks. I feel at the moment that there is no one available who specialises in this disease in my state( Perth is the most isolated capital city in the world!) and would like to be able to go to the uro armed with as much info as i can get my head around. It's already playing heavily on my mind even though i have a wonderful wife whom i've been with 15yrs i still feel very lost.

Sorry if this not the place to ask this but i'm still a little confused at the layout of this site.


 

[mike67]

Jut
Welcome to the Forum Jut. I am on my way to my Uro now but can say to you - yes - you have come to the right site.
For starters I suggest you scroll down to about page 6 or 7 from Nov 4 at 10:29 am . A post by George999 is there with a link that starts : available treatments Knol.google.com etc.
That should get you started with some good and pertinent reading material. You can bet there will be lots of posts responding to you soon.
Talk to you later
Mike67

[0x5555]

The brief summary is the following:

Most uros will say 'take some advil for a week' and that there isn't much you can do for this.  Basically 'let it heal' is the older advice uro's will give.

Until recently the more aggressive treatment was to give injections of Verapamil into the penis - once a month over the course of 6 months.  Many members on this forum have bad things to say about this treatment - that it made their condition worse, it bruised their penis, caused impotence in at least one member's case.  There are a few people who comment saying that it worked for them.  The bad comments scare me more than the good comments comfort me.

The most up to date non-surgical treatment is a drug called Pentox (Trental in Canada and probably Au).  It does a few things - opens up capillaries to increase blood flow, has a mild anti-inflammatory effect and also makes your blood more viscous than usual.  It is used to treat people with sickle cell anemia and those who have claudification of the arteries.  Taken 2 or 3 times daily it has been shown to help stop progression of the disease in about 40% of men.  People on this forum seem to have had a lot of success with it, even those who have had issues for quite a while.

Non-medication based treatments are traction devices and vacuum erection devices.  Both of these go on the theory that if you stretch the scar tissue (those lumps) it will make them more pliable and thus reduce the curvature.  I'm not an expert on these but some people say they have had success.  In both cases I would caution to be very careful with them - you don't want to end up doing more damage than you already have.

Finally, as to pain, from my personal experience I found that leaving it alone for 2-3 weeks saw a noticeable improvement in how much pain I was having.  I wish I had been a little more careful early on while I was still in pain and let my body heal a bit more.  My advice is that if you have pain try and let your body rest and not have sex until you can either feel it getting better or the pain really doesn't go away.  I also would recommend getting on Pentox as the comments from many members are very encouraging and it has clinical trials to back up the fact that it can help quite a bit.

The final treatment is surgery, which many people have undergone and has good success rates.  This is only an option after quite a bit of time has passed (12-18 months) as it takes a while for this to stabilize.

[Iceman]

JUT - try to see Dr Malouf at St George Hospital in Sydney - hes the best and its worth the trip - he will get you on the pentox - if its too far just do what we all do and get on the pentox OR what we call in Au Trental - thats the best advice...but perhaps a visit to malouf is a good call - after all I flew all the way to see Dr Lue in san fran and all i got was pentox:)

[Jut]

Thankyou all for the advice especially iceman pentox=trental in aust. Have ordered levines book off amazon (would appear i can't get it where i am locally) and will start reading as soon as i get it. Any one else who's reading this post and has some advice please post!! I intend to update my progress to add to this excellent forum, blokes helping blokes who would have thought AWESOME!

Cheers Jut

[shadow]

A little late to this thread...but I only just joined!

My hourglassing is about 2.5 inches from the tip (just below the circumcision scar).  

tearing sensation when I get a particularily strong erection

That's a pretty good description, I'd say.

Having just noticed the deformity (last month or so) and started the research (and finding this place) I am trying figure out how best to deal with "sex".

Haven't abstained yet...but the last time I have to admit I was "distracted" by the possibility of "overload".

it compromises the structural integrity of an erection.

I'm a Structural Engineer....so I know all to well the possibilities.  

Making an appointment tomorrow to see a uro.....

[Johnleslie]

Hi,
I read your post. Almost the same situation here. I'm 57, Gay, partnered about 14 years now. Besides sex with my partner I also Masturbate. I noticed my extra bend a few weeks ago. I talked to my doctor about it at a recent follow up. He concured with my self diagnosis. I had read that vitamin E may have some affect on reducing the scar tissue that has develeped that causes the bend. Although he added there is no evidence that it helps. In a lot of cases this problem clears on its own but may take several months to a year. My new bend isn't hindering performance either. I have always had some curve. But this was very noticable to me. My partner didn't notice until I brought it to his attention.
If you'd like to chat drop me an Email.
Best
John
         

[Iseilinus]

bent_2011,

Hi, I agree with you that the penile injury causation theory does not make sense in all cases, certainly not mine since I have not had sex of any kind for over a decade other than nocturnal erections, which are involuntary. My urologist's response was that I probably rolled on an erection in my sleep and injured myself.  Whatever. I sleep on my back, but anything is possible.  More likely it is caused by a combination(s) of things, and oxidative stress is involved in some way that results in a systemic disorder.

In a number of cases, it is probably iatrogenic (doctor caused), in particular meta-analysis is condemning of the beta-blocker class of drugs like Metoprolol for high blood pressure.  Is there a cover up going on? I dunno, and its too late in my case, the damage is done.  The cause(s) will likely never be known, or be uncovered by fluke someday.  But you need to get on the problem now to keep it from getting worse. Only about 10-15% of cases resolve on their own.  To give you my top five proactions:

1) Get all excess hair off your shaft and scrotum so you can check yourself out and in preparation for VED. You do not mention pain, but you should note any painful areas during your inspection.

2) Get an erection and take digital photos of yourself that indicate the curvature and deformations. You can use a cell phone or digital camera. Your urologist will want to review these with you, and they will provide a baseline for future comparisons to see how treatments are going.

3) If you have any excess weight on your body, start now getting rid of it. In some cases, metabolic disorders may play a part in Peyronies Disease.  Watch out especially for any accumulations of fat around the base of your penis. If you drink, you may need to reduce alcoholic intake because it will create estrogens. Work on core fitness exercises.  Cleaning up fat deposits from the base of your penis will also help with the VED therapy/skin pinching.

4) Whatever you decide to do, think and consider carefully and do not harm yourself or throw your money away on unproven methods. Desperation can do weird things to people, and a failed regimen that leaves you worse than you started is a bad result.  

5) Peyronies Disease is sort of an orphan child hiding out in the back woods of of the medical orthodoxy. We dart out of the shadows to collect a few scraps, then fade back into the shadows of obscurity until the next under-powered research project shows up.  There is little research going on and many MD's do not respect patients or listen to them.  Too many are insensitive to the grief endured by patients.  If that happens to you - call them on it and demand respect.  Good luck!

[james1947]

George

You have stated at December 4, 2010

I have just experienced surprising and exciting results from Ubiquinol in combination with Pentoxifylline.  I just ordered PQQ the other day and am looking forward to adding it to the mix.  I think we are really (finally) on to a potential cure for this crap at this point and I can't see how PQQ would do anything but add to the obvious effectiveness of Ubiquinol/Pentox.  - George

You have some update in the subject?

James

[George999]

While I continue to view PQQ as "interesting", but I only ever took a few weeks of it and did not notice anything dramatic.  That is why I never followed up on it here.  I really tend to gravitate toward those things that are exceptionally effective which means Pentox and CoQ10, and now, of course, radical reduction in blood sugar levels, which is paying off big time in terms of reducing inflammation at every level.  Now that my blood sugar levels are way down for some weeks now, I am able to take supplements again that I had to stop taking because of Peripheral Neuropathy.  These supplements made my legs burn with pain, but now that my blood sugar levels are way down, I can take them without any pain resulting.  For me that is hugely important because it means that I can take a blood pressure formulation again that was very effective in getting my blood pressure down.  - George

[goodluck]

I have tried Life Extention's PQQ for about 2.5 months.  I took 10mg a day which is the recommended does.

I can't say I noticed anything.  It is a bit expensive.  I would not discourage anyone from trying it.  I have read if you take more aggressive dosings it may give you some intestinal disruptions.  As George stated I also am putting my resources towords Ubiquinol and ALC.  They all support the mitochondria.

[james1947]

George and Goodluck

Thank you both for the update.

James

[GaryNC]

I am mostly gay I suppose even though I am married and have 4 children.  The attraction never goes away for men though.  I have had peyronies since age 19 and I bend to the right.  I shrank from 7in down to 6.5.  You have plenty still at 7 to use.  I used to have rigid erections so the curve was pronounced but not bad enough to stop me from haveing sex with my wife.  I was a virgin on my wedding night with women anyway.  I met one gay man whose dick was completly taken over by peyronies.  Only his glands would swell when he was erect.  The rest was just twisted and hard.

I was divorced twice from the same woman and we are married again.  I was a gay man in between.  It seems hard for gay men to have ongoing sexual attraction for each other.  Women as difficult as they can be somehow make this better.  Men persue and women surrender.  Until age 50+ now my wife chases me but I like to get caught.  My erections are slow in comming but still work.

I take a pill Clomid to increase my testosterine levels.  It is much better than the gel testosterone.  The hormone causes your balls to shrink.  Clomid tricks the brain to tell the testicles to produce testosterone naturally.  My balls are back to normal size, and my hormone level was actually a little high last blood test.