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

[Tim468]

An injection to get a reliably hard erection to assess blood flow is what the prostaglandin is for. If you have gone to 6 urologists, then you are finally going to get a more complete assessment it seems.

It is not helpful for us to tell you what to do - except to do something. Some have had adverse reactions to injections that have led to later problems with worsening Peyronie's but more often, that is in the context of repeated injections, not a diagnostic injection designed to induce erection.

Tim

[Hawk]

Prostaglandin stimulation sounds like a euphemism for an injection of prostaglandin E1 or maybe a combination of prostaglandin E1 and papaverine which is a somewhat of a common combination.

There has been MUCH covered on this subject since it seems to come up about once every week or two.

if you click on this quote, it should take you to post #625 under "General Comments" .  

The discussion continues between me and "ThisSux" from there up.  We have about 2 or 3 posts each on the topic.  After you read this, let me know if this helps.

Hawk

[Liam]

I can't tell you what to do.  In this case, if it were me, I would follow my doctor's advice.

[ninjagaiden]

Hi sweet boys!!  

To continue the thread on the Propecia (Finasteride) and sugar / aspartame thred,
I understand your point Liam, about the mass hysteria, but I also very understand Hawk's POV who just flushed the finasteride pills...

I just cannot understand why they prescribe propecia like candy for HAIR LOSS!
Like Hawk, if they would have told me first about the side effect or even how this thing works, I would have said "F... you and your sh.. medicine, doc, you can leave that stuff on your shelf".

Liam, I know that all drugs and chemicals have side effects (and I know some people get hysterical over such or such product), I just want to be informed first by my doc when he prescibes me something. I don't want to swallow pills blindfolded... especially things that can mess with my toy... You know what I mean?...
I took this stuff for hair loss, but I don't consider my hair more important than my genitals... so I would have like to be informed first.
Now I don't blame this drug to have caused the worsening of my curvature, don't get me wrong, but I think young guys who lose their hair shouldn't be prescribed drugs like that unless they know the consequences... A doctor should inform the patients...  

[Hawk]

Regarding my initial question about the doppler needle test leading to further fibrosis issues: I left a message with the Urologist requesting I be able to take Viagra, we will see what he says. I will need to give this much thought if he says no and that I MUST have the injection."

I will be surprised if the doctor agrees to Viagra.  I have never known one that did.  The issue is that viagra only works with psychological or physical stimulation.  Injections are totally independent of any sexual stimulation.  An exam rood is pretty darned void of sexual stimulation and the doctor cannot count on the unlikely hope you will be able to stimulate and maintain an erection through a test.

The story about 14 injections to reduce an erection is one of the most incredible stories I have ever heard.  I cannot imagine you will have to worry about that.

[Mew]

All, just something to think about regarding Finasteride and the link to tissue fibrosis, via some more studies... since I recall reading about TGF-Beta playing a role in Peyronie's:

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1751036
Penile Rehabilitation After Radical Prostatectomy: Important Therapy or Wishful Thinking?

... "Together, these studies suggest that the collagen content in the corpus cavernosum is regulated by oxygen tension through the increased or decreased expression of TGF-β1 and PGE1. During low oxygen tension, increased expression of TGF-β1 activates a molecular cascade to increase collagen and other connective tissue synthesis. During high oxygen tension, on the other hand, increased expression of PGE1 activates an alternate cascade to decrease collagen synthesis."

-------------
The Finasteride connection:

Regressive changes in finasteride-treated human hyperplastic prostates correlate with an upregulation of TGF-Beta receptor expression
http://www3.interscience.wiley.com/cgi-bin/abstract/76946/ABSTRACT?CRETRY=1&SRETRY=0

... "RESULTS
The prostatic epithelial compartment seemed to be a primary target site for finasteride action, since we observed moderate to severe glandular atrophy after 4-6 months of treatment. TGF-B receptors were upregulated in treated cases.

We assessed a twofold increase in TBRII mRNA levels in treated cases as compared to controls. An increase in both TBRI and TBRII at the protein level by immunostaining was observed, which also provided a helpful means for detecting glands undergoing regression.

CONCLUSIONS
We conclude that finasteride may modulate the TGF-B signaling system to promote changes leading to apoptosis of epithelial cells and prostatic glandular atrophy. "


... thoughts? Obviously they are referring to the Prostate but since penile shrinkage/fibrosis has been associated with Finasteride use, I see no reason to discount the correlation of Finasteride's upregulation of TGF-B and the impact that may have on the penis.

[George999]

Mew, that is a REALLY good connection!  They are using Finasteride to fix the problem by actually KILLING OFF prostate tissue!  Outstanding!  It does make one have to wonder what this "medication" is doing to other tissues!  What might it be doing to the testes?  - George

[percival]

If, as it is claimed, Finasteride promotes penile fibrosis, it is an important finding. It gives us the opposite of what we seek, and therefore perhaps defines the molecular structure to avoid. Also it helps define the mechanism by which fibrosis occurs and this should lead eventually to a cure for Peyronies Disease.
Thanks for these posts.
Percival

[percival]

In the article supplied by Mew, it appears that sildenfil taken regularly will help prevent fibrosis by increasing oxygenation in the cavernosa. I am interested in this - although the cost of this medication in the UK is very high. Some questions:
Sildenfil = Viagra - works ok but 100 mg dose needed and effect is short-lived
Taladafil = Cialis -works ok at 20 mg dose and effect lasts for 24 - 36 hours
I find Cialis more cost-effective and there is less anxiety about the 'opportunity window'
Can I assume that as they are both PDE inhibitors that Cialis would do the same thing as Viagra when it comes to combatting fibrosis?
In the UK the cost of either treatment works out at about £8 or $16 per tablet. What is the cost in the USA or elsewhere? (for real stuff, not generic or fake).
Regards,
Percival

[Hawk]

Percival,

Viagra 100 mg costs about $10 per tablet or a little less if you don't get any insurance coverage or discounts.  Pfizer does give a discount of every 4th prescription free but it cannot be combined with any other discount through an insurance company.

Viagra, Cialis, and Levitra are all PDE5 inhibitors.  Cialis gives me delayed back pain 2 or 3 days after taking it.  Although it is a listed side effect I have no idea what that is about.  I cannot find the cause.

Often when these drugs are taken for Peyronies Disease or other penile health, they are taken at quarter dose every day.

[percival]

Thanks Hawk,
I tolerate Cialis very well.
I plan a trip to USA in September. There is a big price advantage if the exchange rate stays the same. I assume that I would need a prescription from a doctor in the USA?
Regards,
Percival

[Liam]

Percival,

Without getting too involved, Finasteride causes a reduction in certain hormones.  If these hormones are completely removed (castration), fibrosis occurs.  There may be a connection.  It is not so straight forward, though.

[ocelot556]

Hey guys -

I've been a lurker since I came down with Peyronie's in November - two weeks after I started propecia for hairloss. I'm 23 years old, and the stuff sent me into a really bad depression. I thought I could push through that, but as soon as I saw a noticable curve I flushed my pills, too.

I was dating a girl who moved halfway across the country four months previous, and hadn't hurt myself during sex with her anytime before that. Since I had no partners in that time, I can only conclude that it was the propecia that did it.

My Urologist, though he suggested that I hurt it in some way later, quasi-agreed with my idea. "Oh yeah," he said. "That stuff messes with your body, it's bad news." -- but he also told me most patients don't get worse. My peyronie's is progressing.

So that's it, nothing to add to the discussion other than to add my own .02 - it might not be as rare as all that, just that it's hard to talk about because people tend to disbeleive you. And when your junk is bending, you don't want people calling you wrong or a liar.

Please keep up all your good work reporting this stuff. I've gotten over my hairloss, but having done this to my own body, with or without the knowledge that it would happen, is killing me. I take comfort in that there are so many promising studies displayed here, that maybe modern medicine will find an effective treatment soon.

[ninjagaiden]

Hi Ocelot,

A 2 weeks treatment may be too short to consider this product as the direct consequence of your bending.
I quit Propecia also (after 2 years). There seems to be a connection, but maybe in your case, "it just happened", whithout being a direct consequence of the use of Propecia.

At least you threw this stuff to the bin. Make sure you check out the package before swallowing any other pills, "modern medicine" always have side effects. Some are not important, but the Propecia stuff is, to me, too harmful to take it as a treatment for hair loss.

I think Propecia's side-effects cases will probably show up more in the future, when the peyronies disease will be more discussed in magazines. I think that already more men have this condition than what the percentages say. These guys just don't show up yet because they're probably ashamed of it.

I don't think people will call you a liar if you tell them, just be careful who you tell this stuff to. Some people have bad intentions, you don't want the wrong people to know about this.

Talk primarily to the doctors. To my mind, telling it to relatives / friends won't help, they just can't understand, not being affected by this condition. I've never told this to friends, I think they will understand for 5 seconds, then they'll be fed up if you come talking again about this. They can't understant unless they have the same problem. They can't understand how much it can affect a guy's mind.

And that's good to see you think optimistically about the future, I also think that more effective treatments will appear in the near future.

[ocelot556]

Thanks for the response ninja, I'd rather this whole mess be because of some other unforseen reason than the propecia - it takes away some of the feeling responsible for my peyronie's. But I agree, that's going to go down eventually - like Vioxx - as a horrible moneymaking medicine that did more harm than good.

But faith in medicine is something you've got to have, because acceptance only goes so far.

Another question - I'm sure this has been asked before, but does masturbation, in anyone's opinion, work to worsen the plaques? I don't have any anecdotal evidence to this, but I'm young and a very sexual person. Although my love life has slowed down since the development of my peyronie's, my bodies willingness for it has not. I'm not going crazy with it, but it's a daily thing. I'd hate to think helping myself is actually hurting myself, if y'all get the drift.

[Liam]

Many people attribute their Peyronies Disease to masturbation.  How masturbation and propecia together will react, Lord only knows.  I am being a little tongue in cheek here just to say, be careful in ascribing cause.  The are many factors involved.  If not, everyone on took propecia or masturbated would have fibrosis.  

Good Luck.

Liam

[Hawk]

Ocelot,

Like most things with Peyronies Disease, because most suffer in silence, there is little research and studies are limited.  This means we have to try to use rational thought and logic to project answers from the sketchy evidence we have.  The prevailing wisdom is that erections are beneficial and that trauma (even micro trauma) or anything that induces inflammation is bad.

Within those guidelines the words with any sex are: gentle, lubricated, cautious, and if it causes discomfort during or after, don't do it.  The answer to that last question my vary at different periods of Peyronies Disease.  What causes discomfort at one stage will be different than what may cause discomfort at another stage.  

Otherwise sex and erections are likely to be physically beneficial.

[BertCobb]

Dear fellow participants,
    Thank you for all you are doing to make those with this "thorn in the flesh" seem "normal".  I am a 61 year old physician who was recently diagnosed by a urologist as having Peyronies Disease.  I had to challenge him to get him to decide it truly is Peyronies Disease.  I find that physicians, even urologists, seem to be reticent to give a direct diagnosis as though denying the problem will make it go away.  I sensed that he wanted to say "At least you don't have cancer".  I would have beaten him half to death and said "At least I didn't kill you."  He gave no advice or counsel other than to say "Don't have any more 'rough sex'".  I and my wife of 41 years have decided to be pro-active and to learn as much about Peyronies Disease as possible and to enjoy our sexual lives together for as long as we can.  "You may be too old to cut the mustard but, you are never too old to lick the jar."  I am on Vitamin E and using a VED daily.  Because of pre-existing ED, I also use
Viagra 100 mgm from time to time.  If Viagra increases the size of the penis, would it not be good to use regularly even if not planning intercourse? She seems to enjoy the upward curvature of the tip in the missionary position but I am unable to orgasm inside her because of numbness of the tip from Peyronies Disease and a chronic lower back disk condition.  Does anyone have any suggestions for dealing with extreme numbness?  Thanks for listening and I will read your replies with great interest.

[Angus]

Welcome, BertCobb. What you encountered at the uros office is a scenario played out too many times, and most of us here have been through this. It may help if we knew what your general location is and someone here may help you find a uro nearby with a good track record in dealing with Peyronies and ED. VED use has helped many of us here; it is not an overnight fix but is developing a positive track record with those who stick with its use. Post any questions about VED use; some of us have a bit of knowledge about them and their use.
Your wife may also enjoy joining the private womens discussion...I encourage this. Women can discuss Peyronies issues privately and discreetly. She would be welcome there and have the opportunity to gain other womens perspectives on these issues.
Others will reply shortly and may be able to answer your specific question more directly. Again, welcome to the board!

[Tim468]

Hi,

If you are at all like me (I too am a doc), then you will have access to more complete data via online libraries and through hospital networks.

I recommend reading anything written by T Lue, L Levine, and N Gonzalez-Cadavid. In particular, you might find it worth reading about TGF-Beta1 pathways, and methods of blocking TGF actions.

In general, many of us use these in our self-care (but not all!), as we wait for more definitive cures or treatments:

Broad spectrum Vitamin E - 400-800 IU per Day as an anti-oxidant
http://lpi.oregonstate.edu/infocenter/vitamins/vitaminE/
http://www.ajcn.org/cgi/content/full/84/5/959

L-Arginine, several grams a day, for it's upregulation of Nitric Oxide, and possible ability to help reverse fibroblast activity
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=14996430&dopt=AbstractPlus
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1743-6109.2005.00090.x

Many of us prefer the S.A.N Vasoflow brand of arginine because it is packaged with L-Norvaline which blocks the degradation of arginine to citrulline and collagen, which blocking should in turn promote NO synthase pathways towards NO formation.

Pentoxifylline 400 mg three times a day (see above references) - this prevents TGF function and in turn promotes NO pathways.

Sildenafil (Viagra) 25-100 mg a day, or a similar phosphodiesterase blocking agent (specifically PDE5). (see above references)

Personally, I prefer to take Horny Goat Weed (HGW), 2-5000 mg a day (equals 2-500 mg of active ingredient icariin, which is about 0.1 strength of Viagra - ie equivalent to 20-50 mg Viagra a day)(and cheaper) in order to give myself a more smooth ride than Viagra gives me. If I start Pentox (I plan to), then I may try to get Cialis instead, which agrees with me. Although many of us have one degree or another of ED, and like the beneficial effects of PDE inhibitors on that, we are really taking the stuff to fight fibrosis. Better erections is a nice side benefit, though.  

Many of us are taking other anti-oxidant and anti-inflammatory supplements with the thought that it may help, and hoping it has other benefits as well for our health.

Use of the VED is helpful for many of us - although my Peyronie's remains active, my penis remains fairly straight and only bothered by a gentle upwards curve now. Unfortunately, the dents and list to the left is not better, nor is the pain now and then associated with firm erections.

The numbness is not characteristic of Peyronie's Disease, unless you have suffered damage to your dorsal neurovascular bundle. I would look hard for evidence of diabetes, nerve disease or testosterone deficiency (which can be associated with diminished sensation).

Good luck and welcome!

Tim

Hawk - you may want to move this with a redirect for him to find it!

[BertCobb]

Dear Tim,
    Thanks for the reply.  I know that you understand how this hit me like a ton of bricks.  I had a central L4-5, S1 disk at age 30 which almost did in my sex life.  I made compensation for the back disease for the next thirty years until Viagra came along and restored my erections.  I don't know if my numbness is in my glans or in my head.  My wife is my best friend and she is totally supportive.  She is a member of the women's forum and has found a lot of support there.  I am an allergist/immunologist by trade and I am into immune modulation.  Little did I know that I would have such personal interest.  Do steroids have any part to play in the restoration of sensation?  I have been reading about lysing agents that are being touted for the treatment of Peyronies Disease and frozen shoulder syndrome with phase II studies.  Do you use a VED?  Do you use a "ring" to maintain turgidity?  Have you found prostatic massage helpful?  I hate to be so personal but I am pretty desperate since I have been unable to ejaculate with intercourse for a while.  My main deformity is at the tip with a 35 degree dorsal angulation of the glans/shaft.  I have a hard ring of plaque around the base at the level of the skin of the groin.  I initially injured my penis because it was already numb and I was unaware of the injury until I had pain on later attempts.  What means have been most helpful for you and your partner?  I am perserverating about my penis and it seems to pervade my every waking moment.  I did the typical thing that people do when faced with life-changing news: I decompensated and denied the problem.  I got very depressed but I am getting over that with more information and the support of this forum.  Physicians either do not know or do not care until they experience the disease for themselves.  I had a small penis since birth as my mother took DES during her pregnancy to prevent miscarriage.  Somehow, I was able to father two boys and satisfy my wife by learning compensating techniques.  I have lost 3 inches in length and over 1.5 inches in circumference.  The glans is sharp like an arrow.  I got by with what I had but now it is melting away to the point that I look like a little boy.  The dorsal scarring is pulling it upright and it cannot "dangle".  Boy, I never thought I would ever have this discussion with anyone in my life.  Desperate times require desperate measures.  Thanks again for all the help and support that you and the other guys have and will give to me.  I hope to return the favor to others.  Pass it on.  Gratefully yours,  BC

[Tim468]

It's time for me to go to bed, so I have to be brief right now. I also need to post a "My Story" because others have asked me similar questions (and until I do you might find that very interesting reading about others). Also, the "Newly Diagnosed Highlights" area is full of helpful information.

I agree totally with you, and I am (chronically) angry that I know more about this now than most urologists - even though I cannot tell a tissue tolerance of the tunica when tugging on it with a clamp as they might. But some of the neurologic numbness/pain you describe is so long standing it may not recover well. But we have men here with a history of radical prostatectomy who have recovered enough to have sex (and to orgasm).

Hang in there. This is not a cardiac arrest, and you do not have to fix this in the next ten seconds. But you will learn - as have I - a lot of stuff here you did not know, and it may help you. Although I knew a lot from the start, the biggest thing I have come away from here is having lost my terrible sense of isolation. And that is what hurt me more than anything.

Tim

[Kimo]

Hello Burt and welcome to the forum, your in the right place.....I'm 62 and have had this now for about 10 yrs...Before and after i got this peyronies i had experienced the numbness and no feeling that you are talking about..This is what helped me,,,I found out my testosterone was very low, no feeling and no tingling in the groin's and had a hard time ejaculating,,,man i was really stressing out over it all to the point i also went to a sex psychologist,,,he told me to relax and take more time, i was under a lot of stress at the time and his advise helped,,,BUT my main problem was the low testosterone....At first i started out using the Androgel, it brought my levels up quickly and then a few months later i switched over to the Androderm patch which kept me on a more even level and worked great.....After a few months the gel took my levels up too high and i was climbing the walls, [ 831 ] way to high for me, i mean i was so horny i couldn't stand myself and my wife couldn't do enough to help me out, so i told the doc and thats when he put me on the patch and it kept me around [ 700 ] and i was still horny and had a lots more feeling back where i needed it and i didn't feel like i was loosing my mind....and i was able to ejaculate again more normal...

Anyways, thats what i experienced and it worked for me.....Have your testosterone checked it will tell you a lot.....

Glad your here and hope we can help you, be encouraged you will get through this........

Kimo

[Hawk]

RoyRogers,

You are killing me.  You cannot sport the name of RR around and smoke pot.  That was the boyhood hero of many of us on the forum.  Is nothing sacred.   Also, I have seen a cop crack a few potheads in my day and I did not notice that it seemed to help the inflammation.

Roy,  Seriously, this forum supports discussion on possible treatments that have either studies, substantial evidence, or at least strong logic to suggest they may work.  South American healers are a topic for some other forum or the Off Topic" area

I further think that anyone smoking marijuana for inflammation is rather looking for any feeble excuse to justify smoking pot.  We do not advocate illegal activities on the forum.

[Liam]

Roy,

I'm having a martini because of its antiseptic qualities.  I included 2 olives stuffed with garlic because of the benefits to health in olive oil and garlic.  Also, vermouth is said to antioxidant qualities.  You know, after reading your post, I'm making it a double.

I think I'll fly to Brazil before my trip to London.

PLEASE

[Sjfactor]

I've had Peyronie's since the age of 14 and now I'm 25... Does Peyronie's disease stop the growth of the penis? If so, will curing Peyronie's initiate remaining development?

[Hawk]

Sjfactor,

Welcome to the forum.

Who diagnosed you with Peyronies Disease at age 14 and what initiated the Peyronies Disease.

I ask because Peyronies Disease is almost unheard of at that age.  In fact I have yet to hear of a confirmed case of Peyronies Disease at 14 years old.

[Sjfactor]

Thanks for responding. I was told by a urologist that I may have peyronie's disease. Growing up I use to wear very tight underwear. Laying on my back, my penis is bent at a 40 degree angle. The bend starts 1 1/2 inches from the base. Does Peyronie's disease stop the growth of the penis? For instance, girth growth.... If so, will curing Peyronie's initiate remaining development?

[Tim468]

Growth of the penis is over when puberty is over. Fixing Peyronies (by any measure) will not improve "growth".

However, girth or length may be improved by traction and/or VED, especially if there is shortening due to Peyronie's (but not so certainly for a non-affected, or "normal" penis).

Tim

[Liam]

SJ,

Get a second opinion on the diagnosis.

Tight underwear...we were all raised in tighty whities.

Liam

[Sjfactor]

Well, I didn't want to say anything because I didn't want my question answered with another question, but I have a connective tissue disorder. I read that having CTDs may cause scared tissue in the penis to not  heal properly. I've also had the tip of my penis torn when 13. I read that any traumatic damage to the penis can cause Peyronie's as well.

I know that some in cases of peyronie's disease, it causes the blood not to fill the entire penis (the head of the penis does not fully expanded). This has happened to me occasionally. When I bend my penis straight (to where the curve is) I fully erect.

This is why I asked if it stopped the growth of the penis, girth wise. I'm for certain I have this disease.

[Liam]

SJ,

You present with a very unique situation.  You really need a skilled urologist to look at your case.  Some of the stereotypes of Peyronies Disease may not apply while others may.  

Stunted growth doesn't happen with Peyronies Disease.  

I know that some in cases of peyronie's disease, it causes the blood not to fill the entire penis (the head of the penis does not fully expanded). This has happened to me occasionally. When I bend my penis straight (to where the curve is) I fully erect.

Absolutely atypical of Peyronies Disease.

Let us know what your doc says.  

Good Luck.

Liam

[Hawk]

SJ,

I have to agree with liam (that is kind of rare)  

You need a very competent urologist, not just any urologist.  For starters if you have had a bend for more than 10 years I doubt that any oral treatments are going to significantly impact your condition.  If you have congenital curve no oral treatment will impact your condition.  A mechanical device may have some impact.  You do not need a doctor that tells you "it could be Peyronies Disease".  You need a doctor that tells you he knows conclusively what your problem is.  Having this at 14 strongly suggests it is not Peyronies Disease.  It clearly is not from underware.  Unless something clearly suggests it is Peyronies Disease the evidence points away.  If something else strongly suggests it is, then you have a stand-off.  If something positively concludes it is Peyronies Disease you can start to feel confident of the condition and start studying treatments and considering your options.

It all starts with a thourough evaluation by a saavy urologist.  Especially in your case.

[Tim468]

sj

I echo what you heard. You have something wrong it sounds like, but if it is "Peyronie's Disease" is not so important as figuring our exactly what your anatomy and physiology is. To do that you need an academic urologist who is world renowned for his work looking at you. Given the complexity of things (CTD and a history of trauma), you would do best to go straight to the very best. To do that you may need to wait to set that up, or ask for help from him or her and get names of closer people to you.

I would recommend Anthony Atala, M.D., who is the Director of the Wake Forest Institute for Regenerative Medicine, and Chair of the Department of Urology at the Wake Forest University School of Medicine in the state of North Carolina. You would be very lucky if he took on your case, but he might also be able to get you into see a colleague of his with his supervision also.

Good luck.

Tim

[hascal]

Hi Guys - In a couple of weeks I plan to see my Son ( grown & married) and tell him about my condition. In all the Doctor visits I have neglected to ask if this is hereditary. Any input? Also, please reply if anyone has had any current treatment involving injections, topical creams etc.  


post moved from the psychology topic by Hawk

[Hawk]

Hascal there is some degree of a hereditary component to Peyronies Disease but it is not at all clear and most people with a father that has Peyronies Disease will not get Peyronies Disease.  Also, most people that do get Peyronies Disease have no knowledge of a father with Peyronies Disease, or other fibrotic disorder.  All that is really reported is that it is most prevalent among people of Northern European decent and least prevalent among Asians.  Even this information may be suspect and associated with reporting.

To speculate about the hereditary factor with a son is probably not a good idea given the sketchy data.  If the issue comes up, the most accurate statement you could make is that it is believed that men of northern European decent are somewhat more prone to the disorder but it only effects between 1% - and 10% of men so the odds are not high.

[hascal]

Hawk - Thanks for your reply and your guidance to to proper forum. I have a mother who is Irish and a father who is Scottish. After reading comments about verapamil injections I will have to do some research before I start in two months. This forum is the best that I have found in a year of research.  

[Hawk]

Hascal,

I am interested if you know of ANY other English language Peyronies Disease forums that are actually active (daily or even weekly posts)?

[hascal]

Hawk - The main ones I used were "biospecifics" and "medhelp". These were mostly general and not as detailed as this forum. Gotta sign off - Thanks for your support !!! Hascal  

[Hawk]

...I've got an appointment with my urologist tomorrow morning, so I really want to go in with the best understanding I can and have him prescribe me the best stuff.  So...  

Viagra -- Is the purpose of Viagra to induce erection for men whose Peyronies Disease makes this much more difficult? ...I still get them spontaneously and even randomly without any spefific stimulation, probably as frequently as I did before the onset of my Peyronies Disease.  So is Viagra right for me?

Yes, If Viagra does what it is theorized to do and what animal model indicates it does, it is for men like you and hascal, and others.  The Viagra is not for erections, it is to fight the progression of plaque via inhibiting Transforming Growth Factor Beta 1 (TFG-B1).  It is usually taken as 1/4 to 1/2 of a 100mg tablet daily which is quite expensive.  You could opt for every other day or take a chance on an herbal substitute like horney goat weed that is a weak version of some of the same properties.  That is not to say it is exactly a weak Viagra.

Traction -- Intended to re-mold the penis, right?  Dr. Levine's clinical trial is still underway, right?  I've seen a lot of guys recommend this, but I guess the bending and stretching worries me ...

What bending?  Read the traction thread on the main forum.  It is not long.  It should answer these questions.  

VED -- Intended to stretch the penis length-wise, right?  

length and girth.

Should I be trying to have more or fewer erections, for longer or shorter duration of time?  i.e. Should I be giving the old weenie a rest or a regular workout?  Tim, you have advised regular erections because you say this helps combat progression, right? ... But my biggest fear is doing anything to make my Peyronies Disease worse. I still do get occasional pains in the plaque area, which makes me think it isn't totally static yet, and I usually get some pain there after an erection.

The body gives nighttime erections for a reason.  It is not just sex dreams, it is sleep cycles and it keeps oxygen to the tissue.  Starve the tissue of oxygen and increase TFG-B1.  This means erections are healthy for tissue and natural stretching.  Whether you have sex with the erection, masturbation or otherwise is a bit of a different matter.  There is no data that "sex" helps penile tissue.  It is obvious that some sex can be damaging.

Given all this, does the PAV cocktail still seem like my best bet?  I was surprised to see that noone recommended the drugs I asked about trying (Potaba, Colchicine, Verapamil, Neprinol).  When I first saw my uroligist, he made it seem like my only options were Vitamin E, Potaba, or surgery.

(With a patient smile)   , we understand your need for certainty but we already told you that.  Your post was clear. We responded with an understanding of your situation.  Your doubt comes not from miscommunication, but from lack of study.  It will come.  We did not recommend those drugs because we know no one that has been helped by them. Verapamil injection might be the exception but the data is unclear whether they help, hurt, or do nothing .  That is in the hands of a very skilled urologist.  If your urologist recommended potaba or surgery, he has demonstrated that he is too uninformed to be guiding your treatment.  If he is very open and interested in Peyronies Disease (unlikely), he may benefit from the experience of doctors that have made this an emphasis, (Dr. Lue, Levine, and others).  If you had time before your appointment you could try taking along supportive documentation for PAV.  You will likely need to find another doctor however. There are no studies establishing the effectiveness of the other drugs you mention, even though they are old drugs have been around for many, many, years.  For the most part I can only describe potaba as a drug that the history books have been closed on (my point of view). Go to "search" and search on each of those drugs (be sure to check "show results as messages"


Hawk

[thedude]

Hi, so I have a question regarding my penis curavature. It's like a banana when it's "getting" erect, but more or less straight when erect. The only thing I notice, structurally, is that there's these hard, thin, almost like ligaments, that run down the length of of it, one on each side on the top of it. They are not symmetrical either, one is more "bowed" than the other.

Are these hard ligament-like formations the cause of the peyronie's? Am I mistaken here, and these are really natural parts of the anatomy? What can I do to fix it?

Thanks.

[Hawk]

Dude,

Welcome to the Peyronies Disease Society's Forum.  

Are these conditions you mention recent developments or has this been something that has existed for sometime?

A little more background would be helpful; age, any injury, general health.

Hawk

[thedude]

Cause may be finasteride, though curvature didn't develop while on it. I was on it 2.5 years, and now off 1.5 years. I found out I had low testosterone a few months ago, so I started taking high-dose zinc to treat it...it was while taking the zinc (about a week into it) that the curvature developed and persists to this day.

I guess injury could be a possibility. I had a sex-related incident probably about a month before it actually developed...but I really don't think it was that bad, absolutely no appearance of injury at the time...but like I said the peyronie's actually appeared only a week after I started taking the zinc, so I think this correlates better.

I'm most curious about the the hard ligament-like thing though...it only really appears on the right top side...like just over the top of the right corpus cavernosum. Not as noticeable on the other side. This may have nothing to do with it, but it's just something I noticed.

So, I think that's just about it. I'm 23 years old. Also, I'm currently on SERM therapy to try to restart my endogenous testosterone. Has adding androgens back ever been shown to resolve these peyronie's issues do you know?

Thanks.

[George999]

Dude, my perception is that it probably was the injury, however slight, that actually precipitated the Peyronies.  Zinc can be toxic in high amounts, but not something that would cause Peyronies.  HOWEVER, low testosterone + the slight injury very easily could = Peyronies.  The time lag you mention would be completely expected.  As for the "ligament" type "structures", Peyronies is quite chameleon like in the ways that it can present itself.  Palpable structures and lack of them tend to be all over the map.  The common denominator is the sudden development of deformity.  SERM therapy (attacking estrogen rather than replacing testosterone) is apparently the new up and coming treatment for guys with low testosterone.  I wish you the best on that one!  Anything that can jump start your testosterone levels is likely to dampen the effect of the Peyronies significantly in my estimation.  - George

[Liam]

Could be related to veins or lymph system if anything.  I am thinking this because of your description and you mentioned a trauma and your age.  If so, it will heal.  The good news is what you described does not sound typical of Peyronies Disease to me.  

Do I understand correctly there is no curve when fully erect?

Go to your urologist.  Is a urologist treating you for hormone imbalance?  If so, ask him.

Sorry about the subject.  Somebody had to do it.  

Good Luck

[thedude]

Thanks george and liam...good info.

No, not really bent while straight...you can't sort of tell somethings a little off, but as long as it's fully erect, there's really no issue. I'm just hoping it's not progressing or anything.

I'm seeing an anti-aging doctor (Dr. Crisler in Michigan, if you're familiar) for the hormone issue.

I'll say that it is inspiring to hear about wasa's testosterone recovery below..the fact that he didn't need TRT after his finasteride crash, though it did take 3 years...hopefully the tamoxifen will bounce me back similarly.

Thanks again.

[George999]

Dude, Liam is correct in suggesting that it is very unlikely you actually have Peyronies.  The distinguishing characteristic of Peyronies is deformity when errect.  Perceived deformities in the flacid state usually mean nothing.  - George

[Analyst7]

Hi,

I am 50 and have just begun to experience a maybe 30-degree curve to the left in the head area during erections only - the curve begins in the circumsized area. I had a vasectomy six months ago, but I have no direct trauma/bruising/scarring that I know of. My sexual function is fine - I can have erections, intercourse (slightly painful now) and orgasms, and I really can't understand why this has come about. However, I have cardiac issues as well, and take verapimil, metoprolol, propafenone, lovastatin and aspirin as part of a daily regime. I also take a daily multivitamin and a fish oil capsule. I followed a thread here that suggested that metoprolol can cause a curve. I have yet to see a urologist (I will), but I wonder if any of you can help me understand if I have Peyronies and what treatments might work best for someone who is just now experiencing symptoms? I would like to get smart before I visit the doctor. Even though my symptoms don't appear as extreme as the few pictures I have seen, I am still very uncomfortable with this situation, as I'm sure all of you were/are.

Thank you much,

Analyst7

[Steve]

Welcome to the best Peyronies Disease resource on the 'net (IMHO anyway).

You mentioned that you will go see a Uro...that's absolutely the best advice anyone can give you!  Prior to your visit, look around in these forums (especially the 'Newly Diagnosed' one) to get 'up to speed' on our latest ideas of what treatments might work, and which ones we're convinced haven't a chance (like Topical Verapamil).

Read-read-read!  Get youself informed of the possibilities so that you're ready to barrage your Uro with questions -- that's what you're paying him for isn't it?

Steve

[Kimo]

Steve,,,,I used the Topical Verapamil and it worked great for me. I know that no one wants to believe me, but i'm the one who used it and it worked...

When i first got Peyronies i was twisted and bent like a ugly donut and my plaque was the size of a quarter..I started using the TV and it took about 3 months before i noticed any change and then it was all of a sudden and by the end of the 5th month i was almost straight but left slightly bent up..My plaque was softend up or broken up but still there...A year later i went back on the topical V to see if it would do anymore for me..I was on it for a whole year, using it 2 times a day, faithfully...At the end of a year my plaque was all gone and no more pain when getting an erection....I could always feel it penetrating the skin [ tunica ] and i know that it really did help me...

Now i know that it doesn't help everyone, but it does help some..I have talked to other men over the past 10 yrs who have used it with success. If i hadn't seen any results after 6 months to a year then i would agree with you, but i was willing to go for the long term to give it a try and i'm glad i did....I have no reason to promote this product or tell a lie other than it really did help me and i'm grateful for it....

This is just my humble opinion and all i want is to be a help to others.....

Kimo