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

[Jack]

Jack,

It is imperative that you get seen by a urologist who has the expertise to sort all of this out.  Simply tell your personal physician that you want a consultation with a urologist for your problem.  The problem with NSAIDs is that they can have nasty side effects including causing cardio-vascular and renal damage.  Just what the risks are for your particular NSAID are specific to that NSAID.  My point is that you should NOT be taking a NSAID (even and over the counter one) for an extended period without your doctor's knowledge and consent AND whatever NSAID you are taking might not be doing your Peyronies any good either.  Doctors typically do not prescribe NSAIDs for Peyronies which tells me that you should use caution in this area.  However, I do think you should be using some natural anti-inflammatories such as I suggested which will not have the potential nasty side effects that the NSAIDs have.

Also.  Take a close look at the side effects of adderal.  One of them is sexual dysfunction ie impotence.  If you are having these sorts of problems, they may actually be related at least in part to the adderal.  Here again, you NEED to talk to your doctor about this issue.  Don't be embarrassed, they've heard everything, and they are usually very understanding regarding these issues and may be able to help.  But while you can get a great education by reading our posts and other info on this site, ONLY your personal physician and urologists can sort out the details of your particular situation and get you going in the right direction.

Also, if you are taking prescription meds, you need to be careful what supplements you take.  Some of them can react in VERY BAD ways with prescription meds.  So if you have ANY doubts, ask your doctor or pharmacist before you start taking anything new.  And if you experience anything abnormal going on, STOP any supplement that you may have recently started and get expert help from a medical professional.

- George

Thanks for the advice George (and everyone else who responded to me), all of this information I'm getting from everyone here is invaluable.

I would undoubtedly go to a doctor if I could, but unfortuantely I can't.  I have no insurance, and I won't for 4-5 months.  If I even go in for a consultation, it'll cost me a weeks paycheck, and I have costs that need covering.  So while I appreciate your advice, and I know that you're right, I'm stuck between a rock and a hard place here.  For the time being, I'm just going to have to utilize whatever information I can scrounge up on this site and from you other users; as well as taking the over the counter medications that are recommended.

On a lighter note, as I said in an earlier post my dick in its flaccid state seems to be much softer and less shriveled up than it had seemed before, so maybe this is a good sign?  Maybe the vitamin E and the anti-inflammatories are already helping me improve, considering I started taking them in the earliest stage?  I hope to god I don't need to go see a doctor for this, becuase quite frankly, I can't afford it.

The way I'm looking at it though is this:  Do I really need to go to a Urologist and pay out the ass for him to talk in vauge generalizations about what it could be, and then tell me to take 400 mg of vit E twice daily and come back in 6 months if I have no improvements?  That has been my usual experience with specialists, and I have no doubt that it would be the same now; and I have neither the time nor the means to travel to another state to get a consultation that I can't afford to begin with.

The way I see it is I'm going to get just as much, if not more knowledge and insight from this forum than I would from a doctor.
So any and all advice is appreciated and welcomed.

[Liam]

The odds (and I hate playing them with health) are you don't have Peyronies Disease (based on age and your description of symptoms).  But, you may.  It's a gamble.  At your age, I was in a similar situation with insurance.  I understand.  If you are in college, they may have a clinic that is "free" for students.

Just be gentle with "the lad" for a few weeks.  If you are already seeing improvement, thats a good sign that it is not Peyronies Disease.  

Good Luck!

Liam

[Tim468]

Jack,

Going to the doctor ain't the be-all and end-all of self care. You are taking some important steps to help yourself, and that is good. But it would behoove you to be SURE that in that "4-5 months" that you actually GET health insurance and then go to see a doctor.

NSAIDs may play an important role in helping control Peyronies Disease - they just have not been tested really at all. I took a LOT of advil for quite a few years because of headaches until I realized (Duh!) that they were mostly due to the caffeine I was ingesting. When I stopped - and I also strongly thought that caffeine might be making my Peyronies Disease a bit worse - my Peyronies Disease started to really get worse. In retrospect, I wonder if that was because of my great reduction in NSAID usage. I don't think that the caffeine was protective... but see, this is the problem with each of us trying to figure this disease out.

You are doing some good things. I would agree with George that moving to a full spectrum vitamin E product makes sense. I would tend to agree with George because his Peyronies Disease is getting better. I would also pay attention (and I do) to "Old Man", who has had Peyronies Disease for many years, and has successfully held it at bay with the VED. Avoiding trauma makes sense too. You can talk to your partner about the need for gentle intercourse only - and then stick to that plan. We call that Henny Youngman ("king of the one-liner") medicine (his old corny joke is "I went to the doctor and said, 'Doc - it hurts when I lift my arm' and the doc says "Then don't do that.'").

Tim

[George999]

Jack,

Just for what its worth, when it comes to NSAIDs, I suggest you listen to Tim's advice.  He has experience with them in relation to Peyronies that I don't and he is a doctor by profession, so he is aware of the risks.  Since I am not a doctor, I choose to error on the side of caution.  And I would also suggest that since you can't afford to see a doctor at this point, that you not forget that pharmacists can be a great resource and if you are already buying your meds from one, they generally are a great source of advice when it comes to meds and supplements.

- George

[Liam]

I'll second that.  I am as loyal to my pharmacist as I am to some of my doctors.  

[Jack]

The odds (and I hate playing them with health) are you don't have Peyronies Disease (based on age and your description of symptoms).  But, you may.  It's a gamble.  At your age, I was in a similar situation with insurance.  I understand.  If you are in college, they may have a clinic that is "free" for students.

Just be gentle with "the lad" for a few weeks.  If you are already seeing improvement, thats a good sign that it is not Peyronies Disease.  

Good Luck!

Liam

Would a "softening up" be considered improvement?

Something is definately not right, that is for sure.  And my dick will usually awkwardly bend to the right when flaccid.  Its obvious too, not just as if it was hanging to one side, but looks obviously distorted to one side.  

I hope you're right though...

[Liam]

Jack,

If mine softened up, I would be screaming it from the........ well..... the computer  .  Hardening is what causes the bend and other nasty things.

I don't mean to imply that nothing is/was wrong, only that there are several things that can affect the "angle of the dangle" that are not Peyronies Disease and will be with you for a much shorter period.

Research the incidence of Peyronies Disease as relates to age.  That should make you feel better.

Here is an interesting study from 2002 relating to Peyronies Disease in younger men.  This study found a prevalence of Peyronies Disease in men younger than 40 of 4.8% (30 out of 626).  This was significantly higher than other published studies (but is still a low incidence).  Here is the link.

http://www.andrologyjournal.org/cgi/content/full/24/1/27

[Jack]

How long do you think I would need to wait to see whether or not it heals?  Could it possibly be just soft tissue damage?  Would that heal on its own?   Also, at times the penis feels kind of cold, what might that be?  Poor circulation?

[Jack]

Maybe I should clarify what I mean by it "softening up" a bit.  Before it just felt like a hard mass of shrivled up penis.  But lots of times now, it'll feel like a few fat, hard "cords" for lack of a better word running the length of my dick, with a bunch of soft flesh wrapped around it.  Seems a bit easier to bend it around and everything.  Anyone else have something similar?  

[Jack]

I've got another question: what are these "nodules" I keep reading about?  Is that a requirement to be considered Peyronies?  Also, I don't have any pain; is that uncommon?

Also, there is no bend to speak of while erect, although there is a substantial curve and hardening while flaccid, as well as difficulting acheiveing and maintaing erections (which in itself could be all in my head).

[Steve]

Jack,

For what it's worth, I've never had any pain (other than the initial pain when I got my injury) with my Peyronies Disease, and I'm almost at the 2 year mark.  I too have a 'chord' running the length along the top, and I'm sure that it is what causes my bend while erect.  My only 'nodules' are at the site of the injections where my Uro put the Verapamil.  Prior to the shots, I don't remember any lumps being present.

It sounds to me (definately a layman...not a doctor) that your chords are inelastic in the relaxed state, causing a bend when flaccid, not erect.  To my mind, this would be better than bending while erect (which I think most of us have) which causes difficulties in the desired activity (if you get my drift).

Anyway, good luck with yours...I'm still looking for the 'magic bullet'.

Steve

[Bassman04]

Hi
I've just found this site
I've had my disease for what must be about 6 years and i think it was caused by a vigorous grinding session from my ex girlfriend...its the only thing i can think of...I must have damage/scarring on the top and bottom of my penis as the curve isn't massivly bad even though i must have lost about 1 inch to 1 and a 1/2 inches in total!  I was perfectly happy with me old boy it was about 6 1/2 inches its now about 5"  i dont seem to have erection problems as such but when i do get them they are still painfull and i dont feel what i would call solid....i  have tried natto vit e and even vitalzym..but the vitalzym gave me side effects of a very serious intesinal stretching feeling.  want to get back into trying some self healing ideas and the hyperthemia one sounds interesting..so i need a infrared lamp 250W and need to be 12-16 inches away and it needs to be done for about 30 mins...is this correct?  Also the vit E i take is unique E..is there a better one to take....should i be taking other supplements as well....Thanks for any help anyone can give.....i'm from the UK  

[floweredup]

what can i expect during my initial consultation with a urologist? i am fairly anxious about this,despite having lived with this for 10 yrs i had never sought medical advice,apart from an initial flurry of doctors visits 10 yrs ago,which brought me no further forward,my recent visit to my gp resulted in an appointment with a urologist but my medical practitioner has limited experience of the syndrome and relied on my descriptions,i did not expect him to recommend any particular treatment and i did not ask him about it,i myself presumed surgery the only option(which frankly is scary)and it is only thru this site that i realise there is a wide and varied range of treatments,i will return to my gp this week for further info,i had always put off treatment,and just learned to live with it as i was truly utterly ignorant and ill informed about the treatment,i knew nothing of placque deposits etc,or vitamin e,apart from the obvious curvature(i hate the stigmatising term deformity) i have an indentation halfway down the shaft at the point of the bend,i would estimate the bend to be about 15-20 degrees,there is no hinging effect, in a flaccid state there is no noticeable effect,i have lost consistency and duration of erection(overcome by ed drugs at 25mg dose) i knew nothing of veds etc,and having been in the dark for so long the urology appointment feels like a big step  into the unknown,i would be most grateful to hear of anyones experiences with initial consultation,i am confident of the cause and diagnosis,but not so confident of the specialists! ie i`m terrified of needles,but if injections bring improvement i`m willing to try,what sort of procedures am i likely to undergo during my initial consultations?

[Tim468]

It is hard for me to give advice. I would recommend the follwoing though:

Try hard to be relaxed and open, and go with curiosity. Think before you go about what you want to come of the visit. Most might come up with a list that included: general information and education about the Peyronies Disease; a list of a range of offered treatments and their expected outcomes (here it is useful to be forearmed with information so you acn converse about it); direct questions about what percent of his practice is devoted to this problem - does he do it all the time, or just now and then; does he do any research or participate in any clinical trials; how many surgeries (if he is offering that) has he done? (20? 200? 2,000? - get a ballpark estimate).

Ask him if he will want to study blood flow with a doppler ultrasound, or assess the shape of the curve when erect with medications? Ask if there is any blood work he might recommend. A person offering to do more tests is not necessarily a better doctor.

Above all, I think a "good doctor" should take time to listen; be emotionally available and present in the moment, and willing to be patient with your nervousness (or even help to defuse that in you) and should MAKE SENSE. Above all else he or she should MAKE SENSE. What they might propose to do should be sensible - and if it doesn't make sense to YOU, then they should be able to fix that (but won't if you don't tell them you're confused!!!). I think that if a medical plan does not make sense physiologically, then they might not have thought it out very well.

I would hope that a good preliminary offering would include discussing supplements and the Pentox therapies. Good luck.

Tim

[George999]

A big Amen to Tim's advice.  I would add to that that it might be a good idea to gather up some key Pentox research done by Lue and (Tim, who is that doctor in LA?  I keep forgetting his name, but his papers are so informative and helpful.) and take that along with you on your visit so that you can get an idea of how receptive he is to such information.  If the fact you are somewhat knowlegable about the subject seems threatening to him, you probably should move on and find a doctor who has the self confidence to deal with people who have a clue about medical issues.  Some doctors can't handle these factors well, so observe carefully.  Personally, I have found that the better urologists tend to be the younger ones (sorry Tim) and the ones in the major medical centers OR who are accustomed to working with docs in the major medical centers.  Of course there are exceptions, but these are the guys that have really helped me most with my nearly 50 year history of urological problems.

- George

[Jack]

Jack,

For what it's worth, I've never had any pain (other than the initial pain when I got my injury) with my Peyronies Disease, and I'm almost at the 2 year mark.  I too have a 'chord' running the length along the top, and I'm sure that it is what causes my bend while erect.  My only 'nodules' are at the site of the injections where my Uro put the Verapamil.  Prior to the shots, I don't remember any lumps being present.

It sounds to me (definately a layman...not a doctor) that your chords are inelastic in the relaxed state, causing a bend when flaccid, not erect.  To my mind, this would be better than bending while erect (which I think most of us have) which causes difficulties in the desired activity (if you get my drift).

Anyway, good luck with yours...I'm still looking for the 'magic bullet'.

Steve

Well this has got me thinking.... If I don't have a defined spot where there is plaque, but these "chords" or what-have-you, does that mean that I would lose massive length and girth if the plaque were to dissapear?  The majority of the cases I've studied had an obvious problem area of plaque, usually in a specific area; but if I have no bend while erect, and these rubbery, thick, tube-like things running the length of my dick, does that mean that is all plaque?  Does it mean that perhaps it is something other than Peyronies Disease?

Also a lack of morning wood still... Is this really bad?

[floweredup]

cheers tim and george,alls experience is valuable,my gp seems pretty receptive and i shall tell him of this site,i have this vision of docs and urologists thinking "oh god,not another bloody patient with the internet"!,i think one of the probs in scotland is that the scots male more so than most males are not very "emotionally tuned" the scots male solution to lifes trials usually consists of getting blind drunk and picking a fight with someone! as for pain initially it was fairly excruciating ,tho this is not the case now,the bend has remained unaltered,and i`ve always thought the lack of pain to be a sign the condition has stabilised,for the first 2 yrs approx intercourse was a nightmare,which is why i`ve always been cautious with viagra type drugs, i find cialis rather strong and fairly unpredictable,with regards spontaneeous erections at untimely junctures,whilst i have no pain anymore,i can occasionally feel a vague tenderness sensation at the site of damage,which feels like a sort of small indentation,i presume this is scar tissue,another odd sensation is an occasional feeling of extreme coldness in my penis,but i`ve never been sure if this is the result of my penis being an extremity as it were,which hangs outside my body,i`ve never been sure if this is a symptom,or a result of my fixating on the problem for 10 yrs! as for the aesthetic appearance of the curve,i find that whilst on viagra,an extra strong condom,sort of acts like a splint,could anyone illuminate me as to the efficacy of ved`s?

[Angus]

Welcome to the board, floweredup. You ask about efficacy of the VED... there is a profound amount of VED discussion on the VED and Other Mechanical Devices thread. There is also a Highlights of VED and Other Mechanical Devices topic in the Newly Diagnosed Highlights area. These highlight posts provide compilations of posts from each thread that is a great way to get up to speed on the many topics here. You might start with reading the Highlights VED topic, then read through the main VED and Mechanical Devices thread that is many pages long. This, along with the other threads will help you gather your thoughts on developing a treatment program to your liking if you wish to do so. If you have questions about anything you read here or otherwise, ask away! You've found quite a resource here for Peyronies Disease information and help...  Angus

[floweredup]

on the subject of veds i initially didnt understand what they were,i now realise,the only place i had seen these was in dodgy adverts in porn mags when a young teen! i didn`t realise they had a practical application.anecdotally,i recall a fellow on the periphery of my social circle some years ago,a real macho man,ex army,highly trained martial artist,tall muscular,with an air of invulnerability,he ran a small security firm which hired out ex army folk to work as doormen in problem pubs n clubs,some folk i know were at his flat one evening,where in the living room they saw one of these devices,the guy became uncharacteristically embarassed,and ushered the device away,he was of course in line for some gentle leg pulling by his pals(tho not to his face!) it is only now i wonder if the guy was a silent sufferer of peyronies,as i say he was a proper scottish hardman,highly unlikely to admit any emotional or physical vulnerability,and not likely to be open about such matters

[floweredup]

has anyone here had experience of surgery? if so how effective was it? it`s an option i would consider,pro`s of surgery in my city of glasgow,are that our surgeons have a global renown for their excellence,tho this mainly derives from glasgows reputation for knife crimes,stabbings slashings etc(glasgow has a shocking incidence of this sort of thing) i know that medics serving oin the frontline of iraq are trained in glasgow for battlefield surgery techniques,so if i was asked to consider surgery i would feel fairly confident in the hands of the3 surgeons,cons of surgery in the uk in general concern a "superbug" called mrsa,which is rife in our hospitals,we have the nhs(national health service) which is underfunded and has been run into the ground by britains greedy corrupt politicians,rarely a day goes by without a new case of mrsa infection,and i wouldn`t like to catch it downstairs!

[finartmike]

Hello All,
I have just been diagnosed with Peyronies (well I diagnosed myself from the internet and the doctor confirmed it).  I am just 50, in reasonable health - good blood pressure, no medication apart from anti depressants.  In the past I have hit the woman's pelvic bone with my erection  [apart from pain, no visible trauma] -but noticed no bend till 4 months ago - a short while after a very painfull penetration, where my lady said it felt as if my penis was bent double.  Over the past few years my general erection was becoming less hard.  Perhaps this made my erection more susceptible to injury.  I first noticed a pea sized lump in the shaft, then the crooked shape of my erection.

I have read a lot of your posts today and I am both impressed by the depth of knowledge but now seriously depressed at the prognosis.

I have poor urine flow which was previously attributed to a benign enlarged prostate:  which is now diagnosed as firm but not enlarged.  Yesterday, Flomax has been prescribed for that which lowers blood pressure I believe.

There will be no more sex with my lady as our relationship has been intermittant and we have again fallen out over the possible cause of this perplexing condition [she is convinced it is masturbation and over use which is my fault].  I am virtually in tears.

I am from England and I see this is a U.S. forum - My urologist consultant saw me yesterday and has not specifically prescribed anything to combat the scar tissue he confirms is present in the shaft of my penis, but he has prescribed viagra to enhance my erection.  He rules out surgery at this stage till the 4 month trial with viagra and flomax, as surgery would shorten my penis by 1 cm.  As my penis is already borderline small I would not approve of surgery.  As I have had no sympathy from my intermittant lady friend, I do not expect to be able to trial viagra as I will not be able to have sex.

What do the forum members say of the product 'Neprinol' which is supposed to disolve the scar tissue by the enzyme action of Nattokinase, Serrapeptase and CoEnzyme Q10?

I cannot really say how long I have had peyronies disease, save to say I discovered it 4-6 months ago.  It may have been creeping up on me for some time.  Also, my flat is underneath powerful radio and microwave transmitters such that I can feel the electromanetic field through my body.

I am so very upset.  Is there anything I can do?  

[George999]

The majority of the cases I've studied had an obvious problem area of plaque, usually in a specific area; but if I have no bend while erect, and these rubbery, thick, tube-like things running the length of my dick, does that mean that is all plaque?

My, admittedly non expert, opinion is that indeed it is all plaque.  I have had these things running in every direction.  Laterally, diagonally, around the circumference, randomly, you name it.  And I have experienced having them disappear.  The common wisdom seems to be that plaques form as blotches or tumor like balls, but I have seen them take all kinds of weird forms over the course of my struggle with this issue.  I currently have a very small plaque in the septum that has caused an inordinate amount of deformity (it has shrunk to practically nothing now with almost no deformity left) connected by a 1/2" long chord to another plaque that is much larger and more typical in form on the side of my penis that produces literally no deformity at all.  Go figure!  Right now my most obvious deformity is a shallow diagonal 'crease' along the line where the chord runs between the two plaques.  So there you are.  In my opinion its all plaque and it all can be successfully dissolved away with a lot of time and patience.

Wishing you the best this New Year!

George

[floweredup]

hello,finart mike, i live in scotland uk and am awaiting a urology consultation,i`m 30,and have had this for 10 yrs,and have been thru what you are experiencing(see my earlier posts,i`ve just joined too) as for what you can do,by joining this forum and having sought help,youve done the best thing you can do,it is by no means the end of your life as a man,and i think the psychological aspect of it is worse than the physical,with time and treatment and new perspectives i reckon i can guarantee you will gradually come to terms with it all and start feeling better about yourself,in the early stages of my peyronies,which also ruined a relationship,everything was all too subjective,gradually this will change,you`ve already made massive inroads  

[finartmike]

Thank you for your kind sentiments flowerdup

[George999]

I have poor urine flow which was previously attributed to a benign enlarged prostate:  which is now diagnosed as firm but not enlarged.  Yesterday, Flomax has been prescribed for that which lowers blood pressure I believe.

Flomax is a class of drug known as an 'Alpha Blocker'.  You can read up on Alpha Blockers on the Wikipedia website.  As far as I know, Alpha Blockers provide no known benefit in terms of Peyronies.  They are first line for Prostate issues though.  If the Flowmax does not work for your prostate problem, I would suggest you request to be checked out by your urologist.  Alpha Blockers can have some blood pressure lowering effects.

There will be no more sex with my lady as our relationship has been intermittent and we have again fallen out over the possible cause of this perplexing condition [she is convinced it is masturbation and over use which is my fault].  I am virtually in tears.

Nonsense.  Masturbation does not cause Peyronies.  Even injury to the penis does not always cause Peyronies.  Peyronies is caused by a situation where the normal healing process does not work properly.  Men can end up with Peyronies from extremely minor trauma if they happen to be biologically susceptible to it at the time of the trauma.

I am from England and I see this is a U.S. forum - My urologist consultant saw me yesterday and has not specifically prescribed anything to combat the scar tissue he confirms is present in the shaft of my penis, but he has prescribed viagra to enhance my erection.  He rules out surgery at this stage till the 4 month trial with viagra and flomax, as surgery would shorten my penis by 1 cm.  As my penis is already borderline small I would not approve of surgery.  As I have had no sympathy from my intermittant lady friend, I do not expect to be able to trial viagra as I will not be able to have sex.

Viagra alone is not likely to solve your Peyronies issues.  The best thing you can do for yourself at this point in my opinion (and I am NOT a doctor) would be to get yourself on 800IU per day of a "broad spectrum" type of Vitamin E.  Read the supplements thread on this forum, there are numerous references as well as links to sources.  You will also find a wide ranging discussion as to various supplements guys have found to work and others that are fairly useless.  There is also a very promising drug treatment being pursued by some forum members.  It involves a combination of Trental, Viagra and Arginine, sometimes referred to as the 'PAV' cocktail.  There are references to research backing up the effectiveness of this regimin.  I suggest you carefully print out some of these studies and submit them to your doctor.  He is now prescribing Viagra for you.  Fortunately, in terms of cost this is the biggest hurdle.  Trental is now available as a generic Pentox and is very affordable and Arginine also is not hugely expensive, though it would probably cost you out of pocket since it is a supplement not generally covered by insurance.  I would also recommend Vitamin E along with this whole approach, since Vitamin E has been shown in studies to work synergistically with Pentox.

What do the forum members say of the product 'Neprinol' which is supposed to disolve the scar tissue by the enzyme action of Nattokinase, Serrapeptase and CoEnzyme Q10?

While Neprinol MIGHT have some beneficial effects, I would save my money for things that are known to be effective.  Neprinol, along with some other highly promoted products, is extremely expensive and its effectiveness is dubious.  I have seen all kinds of 'references' to 'research' involving Neprinol, none of which has ever lead to anything convincing as far as I am concerned.  I currently have a $130 bottle of Neprinol collecting dust because I have found other things that are more effective.  I probably will take them eventually, but it will be unlikely that I will be buying any more of the stuff.

Also, my flat is underneath powerful radio and microwave transmitters such that I can feel the electromanetic field through my body.

Who knows what the effect of radio frequency radiation is?  On the other hand stray microwave radiation is a known health risk. You might want to have it measured in terms any stray amount of radiation that might be leaking into your flat.  This is not a big thing.  I think they even sell the instruments fairly cheaply, they use them to check Microwave ovens for leakage.

I am so very upset.  Is there anything I can do?

The best thing you can do for yourself is to try to take charge of your situation.  Read, read, read.  There is so much information on this site and this is becoming a truly international site as many from various parts of the UK are beginning to post and a few from other areas as well.  So welcome!  The more guys we have from the UK participating here, the more we can accomplish there as well in terms of making contacts with docs who are helpful and up to date.

- George

[finartmike]

Very many thanks, George.  I have written down the ingredients of the PAV cocktail and I shall research the same - kind & grateful regards
mike

[csup]

fineartmike,
George's responce to your recent post was right on as usual. He offers all here a wealth of knowledge and information. I will add my 2 cents worth on the Flomax as I am on Uroxatral which is similar.  It is indeed an Alpha Blocker that is directed at the receptors in the urethra around the area exiting the bladder surrounded by the prostrate. Very simply Flomax or other medications of this type relax and help smooth the wall of the urethra allowing a stronger flow. It does not have any affect that I can tell on helping against Peyronies Disease. The PAV cocktail on the other hand does seem to be working for me, along w/ vit E and other supplements discussed on this forum. I have recently noticed a small change in the shape and size of my plaque. It seems to be slightly smaller than before. As George advised, research the info, make copies and get back in to your Uro to get on this regimen. crs

[finartmike]

Thank you csup.  I shall retire for the night now here in england!  I shall log on again when you greet another New Years day. Have a happy one, all, and especial thanks for this forum.
Mike

[couldbeworse]

I take Uroxatral, and it helps me with Peyronies pain.  Often I feel a general pelvic tightness and this causes discomfort focused in the area of my plaque.  The alpha blocker loosens everything down there, helping me relax, alleviating the pain.

[Bassman04]

hey finartmike

I'm from the UK too...Essex to be exact.   Have only just found this website myself and will get meself involved in some coctails of some sorts.   Good luck with your treatment mate

Tom

[Bassman04]

So i was thinkinga about buying some arginine...does anyone know what would be an ideal dosage?  also i have some unique E Vit E  i take 400 mg a day is this enough?....Shold i try this trental even though i don't have any urinary probs...thanks for any help guys

[George999]

Bassman, Alpha Blockers (FlowMax, Uroxatral, etc.) are for urinary (prostate) problems, Pentox (Trental) is primarily used for fibrosis (Peyronies) along with Arginine and a PDE blocker like Viagra and sometimes an anti-oxidant like Vitamin E.  Try not to confuse the two.

Couldbeworse, It is interesting that Uroxatral is helping with the Peyronies pain.  Perhaps it is increasing circulation in the area and helping that way.  If it seems to be working great, but I have seen no research confirming it to be effective, but then each person reacts differently to different substances.

- George

[Bassman04]

thanks George 999....looks like i'll get some pentox and arginine then.....what's everyone on dosage wise ?

[csup]

Bassman,
I don't know how it is in the UK, but pentox is only available by prescription in the US. As it is originally specified for use with intermittent claudication, and more recently has been used for fibrosis, but not Peyronies Disease, you might have trouble unless you have a DR. willing to work w/ you. Part of my regimen is as follows:

pentox - 400mg ea. 3 x daily (after meals) (this is standard prescribed dose for claudication)
full spectrum vit. E - 400IU ea. 3 x daily (after meals)
arginine - 1000mg ea. timed release 2 x daily (morning and nite)
viagra - 25mg taken at bedtime

I take other supplements, but the above seem to be the heavyweights  for controlling Peyronies Disease. crs

[Bassman04]

csup cheers for the reply mate

looks like i'll have to get in touch with me Doc,  i have no faith in the NHS over here though..oh well fingers crossed hey.

i'll get the arg and vit e though..something is better than nothing.

once again thanks csup...really appreciate it....dont normally talk about me prob as only a few people know, and it actually mentally unloads me abit......can get really down sometimes, i spose you know the feeling

[SUERTE]

Hello Everyone-

This is my first post.  Over the last couple of months I have noticed (TWICE) that my penis, while on its way to erection, had a drastic bend to the right.  Almost like if someone chopped it at the middle. This only has occurred twice and only after back-to-back sex.  I can quickly straighten it out while the bend is occurring.  It happened the last time a couple of weeks ago.  I didn't think anything of it, straightened it out and continued.  Later that day, after hours of exercise, I did some research.  While in the flaccid stage (which regularly looks smaller after physical exhaustion), I tugged on my penis to see if in fact when it would become erect, if it would curve.  Needless to say, I was not in the "mood" and an erection was not obtained.  Shortly after that, my penis shriveled up, smaller than ever, and became pretty hard while in the flaccid stage...pointing counterclockwise.  I had difficulty peeing; however, no pain.  My penis came back to its original size later that night...with the help of some heat applications.  I was able to gain an erection the following night with no pain, or curve.  Looked a bit larger in the shaft of the penis as I was progressing towards a full erection.  Once a full erection was obtained, there was no pain and only a very slight curve to the right.

I took levaquin for potential infection and began Vitamin E (1000 IU) per my urologist.  He mentioned to me, after feeling it, that I might be in the early stages of Peyronies Disease, but that I would be "alright."  That was just over one week ago.

Since then, I have had no pain, no noticeable plaque or extreme hardness in the penis.  My erect penis is fine...with just a little curvature to the right.  I have had sex twice and masturbated 3X.  I personally believe that I might have caused/aggravated some trauma in my penis that led to this acute development of Peyronies Disease like Symptoms.

However, I believe that in the flaccid stage, my penis has become somewhat "torqued".  Or, a more dramatic level of penile torsion?  Perhaps it has been there forever, and I haven't noticed? Also, it feels that while in the soft stages it is pointing counterclockwise. I do know that I have had some level of torsion in the past.  My penis hooks counter clockwise about 30 degress when in the longer flaccid stage.; which is apparently normal.  It hooks that way in transit to erection; however, once erect it is close to straight.  Almost looks banana like on its way to becoming fully erect.  Dont feel or see any plaque.  Although, the shaft of the penis does look more pale than the rest of it whil in the sof stages. Also, while flaccidit looks like it has three or four wrinkle rings on the middle of the penis.  Those go away as i become larger.

Tonsof infor, I know...however, not sure that my urologist cares as much as you guys might.

Peyronies Disease, or an injury?

Thanks an infinite amount.

[Tim468]

Dear Suerte

Welcome to the boards. All of us can only speculate on what might be going on with you. Some of us tend to believe that a described lesion is Peyronie's Disease, and others prefer to advise watchful waiting at this stage. All of us wish we were able to figure it (you, ourselves) out and fix it and make it better.

From my personal experiences, I can tell you that I have learned to listen to my body. I notice when things are different - and I have noticed several new "dents" on the left side of my penis in the last 9 months. I believe firmly that those dents would have been points of curvature if I had not been using the VED, and using as much in the way of anti-inflammatory medications/supplements as possible. For me, preventing worsening has been easier than trying to regain lost ground. So pay attention to your body and good for you in trying to see if you might benefit from these boards.

Additionally - and again this is from my personal experience - I know the terror of believing that something new or bad is happening, and I have noted with that changes in my erections. I now see how, in retrospect, some of the terrible things I believed were happening were not happening, but that my fears led to erectile problems. Also, it led to increased attention to things that might not matter as much.

I now understand that how my penis looks on it's way to the end-product is not that important. If I bend right or left, or have wrinkles, or feel too hard or small when flaccid - none of that is too important if my erection is unchanged.  I *KNOW* that I am paying more attention when I am worried,.

In your list of issues, some seem possibly die to stress, such as feeling hard when flaccid, or shriveling up to too small a length when flaccid. I think the differences in shape as it fills ARE important in understanding that something might be happening to your tunica albuginea. You are lucky that you went to a urologist who did not blow you off as a worrier with no problems.

I would agree with the urologist in using the vitamin E. I would also strongly suggest it be a full spectrum vitamin E, and that you read up here on other possibly beneficial supplements to add to the regimen. I was young when I deveoped my initial problems, and my main way of dealing with it was to have a LOT of sex. Now I am older and that is not as easy or as healthy an avenue for me! So now I use the VED to make sure that my penis (and more importantly, the tunica) is stretched out nice and tight - even when I am not in the mood. Reading in the vacuum device thread might help you find some afforable ways to start a VED program.

Good luck!

Tim

[Hawk]

Suerte,

I could echo what Tim said but since I have little new to add, I will just say welcome. When reading to catch up, you will gain important knowledge, faster if you read the "Newly Diagnosed Highlights" board that has only the highlights of each topic. It will look much like this board but it is a read-only area that will save a lot of time (thanks to Angus).  You should still comment and ask questions here on the main board.  Here is the link to the "Newly Diagnosed Highlights" area https://www.peyroniesforum.net/index.php/board,18.0.html

[TonyB]

OK, new guy here.  Been trying to read up on your forums, but you guys are really prolific in your posts!!!  But I have gotten a lot of questions answered already, and it's nice to be somewhere where I can talk about this openly.  I have a small area (maybe the size of a small bean) on the underside of my penis on the left side.  I noticed it once a couple years ago and it went away quickly.  It came back last week and although it seems smaller it is not gone.  I went to my physical yesterday and the Doctor gave me the name Peyronies.  Of course he didn't know much about it so I wouldn't call it a diagnosis.  He told me to "Google it."  So in my search through cyberspace I was lucky enough to find you guys.

Interestingly enough I do have Dupreyton's Contracture on my right hand palm.  Again, it is in the beginning stages and I have no bending of the finger yet, although the lump seems to be getting bigger slowly.  Seems that there is some theory that connects those two things.

I do not have a problem with erections (yet) and I don't have any curvature (yet).  So basically I guess what I want to know is, what can I do at this point?  How do I get diagnosed?  If I am indeed in the beginning stages of Peyronies Disease, then what is the best course of action?  Should I be massaging it, or heating it  Does having sex & masturbating aggravate the condition (it doesn't seem to)?  I've read about lots of therapies, but most of them seem to deal with ED which I don't have right now.  If there's a chance I can nip this in the bud and prevent or reduce further progression I would sure like to know how.

Sorry for all the questions, but thanks for listening.  It's a little alarming when something happens down there, so I have a bit of anxiety.  I look forward to any feedback.  

PS: By the way, I'm 38, 39 in April.  Seems that this is when all the fun things start happening to our bodies!!!!

[harchunk]

I was diagnosed about 2 weeks ago.  Have been having pain and a slight bend for a bout a monmth.   I just started taking vitamin E(urologist recomended) is it to early to consider like surgery or a V.E.D. or something else.....  

[Old Man]

harchunk:

The VED can and will in most instances help with Peyronies Disease. However, the best rule of thumb that has come out of all the guys using them is that if there is pain or discomfort, do not use the VED or stop using one if you are.

So, you should determine how much pain or discomfort you are experiencing and if you think that you could tolerate the negative pressure created by the VED, then you might want to consider the VED. There are many and varied debates about how soon to use any therapy for Peyronies Disease, so my advice for you is to read all the threads posts on the main forum. There is a "child board" section that has a reduced version of the highlights of each subject, so check them out.

Lastly, I would seek out the best medical help from a qualified urologist that has experience with treating Peyronies Disease. Some uros treat the subject lightly while others concentrate their efforts toward Peyronies Disease more and those are the ones you should trust to help you. Some advocate using the VED and others do not. There are some studies being done currently using a three cylinder VED that should be reporting their results soon. One is being done in Birmingham, AL and the web site for it is:
www.vacuumtherapy.org

Suggest you also check out all the other methods of treating Peyronies Disease. There are many threads discussing the possiblities and/or results of using oral therapy too. There are highlights of these methods also on the "child board" too.

I am sure that others on the forum will be stepping in with comments on their views about which way you should go, etc. Early treatment seems to have been the best for treating this horrible mess.

Old Man

[Steve]

Tony,

I'm glad you found this forum.  It took me a while of searching before I stumbled across this one, but it's by far the best that there is (Thanks to Hawk and all the others' shephearding).

I think you're lucker than most in that you may have caught this early enough to have a good chance at holding it at bay.  As Old Man (the VED guru) mentioned to Harchunk, check out the oral therapies section on vitamins and supplements that many swear by.  BTW, many suggest strongly that if you go with Vitamin E, you go with the full spectrum version.  Check out some of the posts by Tim, our resident physisian and fellow sufferer.

I was lucky enough to join up when the forum wasn't so large, so I've been able to keep up with a lot of the posts...you've got a lot of reading to do here, but it'll all be well worth it!

[TonyB]

Steve,
Thanks for that.  You're right, I've got A LOT of reading to do.  Guess I'll just take a little chunk every night and go for it.

Again, I've not been diagnosed yet, but with everything I've read it seems the most probable thing, even though I have no bending or ED problems.  Do any of you remember the very beginning stages?  This thing seems to change daily.  Today it (the little cluster on the bottom of my penis) seems to have broken up a bit, is that possible?  I've been massaging it thinking that I can break it up, but is that wise?

I'll keep reading, and welcome any feedback.

By the way Steve, love that road sign!!!  You guys crack me up; what an awesome attitude!!!

Tony B

[Liam]

I remember the early stages of Peyronies Disease.  The worst part was the uncertainty and helplessness.  From being on the forum for some time and using my own introspection, I don't think massaging will  change things one way or the other.  The only negative outcome might be some soreness just from irritating the area.  You will not break it up.

Mild heat helps pain.

The good thing I can tell you is from the time of onset, first syptom, to "full blown" Peyronies Disease was between 6 months to one year.  If you had a symptom several years ago and just now are seeing other symptoms, you may be one of the lucky ones who never have the ED or curve.

I wish I could say either way with 100% certainty.  At least you could know for sure.  

My best advice is to take the supplements and enjoy what you got.

Good Luck!  Keep us Posted.

BTW, you have good posts.  Don't forget your subject line.  That makes it easy to look up an old post.

[howcanthisbe]

anyone seen the claims that scientist have cured cancer? Im not saying the claim is true.... I havent even looked into it. I was thinking though if it was true and this drug does dissolve tumors then couldnt this drug possibly disolve the plaque for peyronies? Heres a google search on the topic, this is recent...ive only read one article about it because im busy right now. I  know I will probably get flamed for posting this but anyways heres a google  search  link:
http://www.google.com/search?hl=en&q=scientist+cure+cancer

[ComeBacKid]

HCTB,

I can't say, but I have listened to my uncle rant and rave about how there really are cures for some cancers, he claims that doctors don't want them to be revealed because they will be out big bucks and are in it for their own personal gain.  Lately he has taken up an interest in herbal medicine, saying he lost faith in mainstream medicine practice in the United States.  I also had a good friend of mine from virginia tell me her grandma had cancer and was cured after taking some pills from china or the far east.  This topic has come up on talk shows, and across the internet, I think often times we hear of these cures for cancer from eastern countries, unless someone runs a scietific test we have no real way of evaluating them.  I certainly wouldn't take someones word for it.  Naturally I'm a skeptic of pretty much everything, always looking to over anaylze a situation. However, we do have some folks on this forum taking far east pills such as horny goat weed, ginseng... etc...  Some have said these remedies have helped erectile dysfunction and what not.  However, this is a far throw from a cure for cancer, perhaps there is some truth to what herbal and eastern medicine can achieve, but maybe a full cure isn't exactly what it does.

ComeBackid

[Hawk]

Conspiracies abound but the bottom line is that doctors and pharmaceutical staff die of cancer at the same rates as the rest of us.  So do their families.  The one exception is a somewhat lower rate of lung cancer death among doctors but that is easy to understand since they are less likely to smoke.

It is inconceivable that anyone with a cure would withhold it from their family.  It is also inconceivable that we cannot even keep military and CIA secrets, but that medical officials could prevent someone from spilling the big story on secret cures (a big news agencies dream story).  Now, is it possible that a drug recently showed promise in a test tube?  Is it possible there is inadequate research on some drugs or natural treatments due to financial considerations? Sure, that is POSSIBLE, but even if true, it is not a big undercover conspiracy.

[George999]

but it is much more subtle than the conspiracy theorists suggest.   It is also important to understand that it is a natural conspiracy.  It is not driven intentionally by the doctors (they are in fact victims of it, just a much as their patients are) or even the drug companies.  It is instead driven by a system wherein inventing a cure pays huge rewards, but discovering a cure produces zero rewards (economically).  And the cost of discovering a cure is nearly as expensive as inventing one.  This is why pharmaceutical companies spend billions on producing patentable medications and literally nothing on investigating the curative properties of common substances.  Understanding why this happens is simple.  What would you do if you were in their shoes?  It is also what drives doctors to practice medicine the way they do.  The care may not be the greatest, but the doctor ultimately has the realization that if he or she can't make enough money to eat and feed his or her family, he won't be able to provide anybody with care at all, so he makes unpleasant choices (just like all of us must from time to time).  So you wrap that all up and there is your conspiracy (and if you look really closely, you may even discover that you are a part of it).

- George

[George999]

I will make this brief, since it is an off-topic response to hctb.  And the comment to hctb is, that IF you read the search results of your link thoroughly (I assume you are referring to DCA testing done by University of Alberta), you will come up with an article containing this qualification, critique, or whatever you want to call it:

First, I did a literature search on PubMed looking for articles with the terms dichloroacetic acid and cancer.

Although I didn't have access to all of the articles, one underlying theme stood out: DCA is an organic chemical that causes liver cancer in laboratory mice when put in their drinking water.

It is not nontoxic. It is a byproduct of another chemical called trichloroethylene (TCE), which has been a source of concern as a cancer-causing agent for some time.

So when the researchers described DCA as being 'non-toxic', that was an assumption on their part based on the fact that DCA is already approved as a prescription drug.  The problem here is that when the whole thing hits the press, it becomes oversimplified.  So while I certainly agree that such drugs should be made available on an off-label basis to people in dire straights, I think it is also important that they NOT be used as a first line treatment for patients who have a good chance of responding to conventional PROVEN therapies.  The same holds true with Peyronies.  What kinds of risks are you willing to assume in order to 'save' your penis?  If you are willing to bet your life on a cure, there are more opportunities than Carter has pills.  But sorry, if I were in your shoes I would decline that offer without a second thought.   One has to be very, very careful how one translates research data into a treatment plan.

- George

[changsta]

Hello, I'm new here and I'm guessing I'll be around for awhile... Anyway,

I've known that I've had a bend in my penis nearly my entire life, but chose not to deal with it because I didn't know how and it was not of immediate concern to me. I'm only 19 years old right now, in college, and in deep trouble cuz I've never done anything with a girl and don't even know how to begin. I'm starting to face my problems though, so that's a plus. For as long as I can remember, I've had this curvature in my penis, but after reading up a bit, I think my first realization of the 'plaque' was about 7 years ago when I thought I had STD's when I've never had sex before lol. There were no pictures, so I could only guess. There's really just too much information and terms to digest. So if any of you experienced members can give me a heads up of what my lifes gonna be like and answer a few questions for me, that would be awesome.

1. I've been to a urologist, but he couldn't really do anything for me. I didn't know how to verbally communicate my problem and express myself enough to him for him to understand how much this means to me. I took a urine test and showed him my flaccid penis. And since I couldn't get it up in front of him, he couldn't do anything, except to instruct me to go home and take pictures of myself to show him later, which I didn't do. So my question is: how would I go about seeking the most efficient means of help professionally?

2. I've been so self-concious about this stuff since forever. I've been good at a lot of things, just in general. But there's always been that part of my life that's missing, that I'm afraid to seek out cuz I'm just scared i guess. How do you approach girls with this type of problem? I mean, how do you introduce it, like waht do i even say..? Especially to someone that I don't know too well who wouldn't necessarily 'be there' for me.

3. Is there a place with general basic information on the penis that a newbie can understand? I'd make this my life goal if need be, to learn where I went wrong. But I need somewhere to start first. I do have my personal theory on how I got it, but I really just need to know more. And lastly, how does the shaft of the penis connect to your belly (the top part to your pelvic bone?)?


Edit* Is there someone that knows a lot about the male anatomy that I can talk to?