PEYRONIE'S TREATMENTS - Questions, Plans & Remarks

[cowboyfood]

per the anecdotal evidence on our forum and remarks to me from my urologist, "leaving it alone" for any significant length of time would probably make the situation worse.  

Recently, I visited my urologist, who sees a relatively high volume of Peyronies Disease patients, for a six-month Peyronies Disease check-up, and he shared some of his observations with me concerning the issue you raised here. (aside - before my appt in the afternoon, he had already seen five Peyronies Disease patients earlier that day).  

He told me he strongly believes that many of his patients do not take "action" early enough, which allows the scar to damage the penis in a flaccid, unstretched state, which in his opinion, can cause significantly more deformity than if the patient had "used it."  He shared with me that patients come to him after having done nothing for a "long time" and because of their depressed state, had not engaged in much, if any, sexual activity, including masturbation.  He told me he believes that continuous (i.e., at least daily) stretching of the penis mitigates deformity damage.  He is a strong advocate of the VED, or at the very least "using" the penis with a partner or via masturbation.  He told me, unfortunately in his opinion, that many men do not want to "deal" with the VED, stay depressed, and do not get their penis stretched out which causes a worse deformity than otherwise.

His opinions seem to parallel many of the observations of several long-time veteran posters and my own personal experience where I took almost immediate action to get daily engorgements with the VED (which, help to "boot-strap" me mentally, which allowed my natural erections to become better due the physical exercises and improving mental state - and, NEVER underestimate the necessity of an almost blissful mental state to have exceptional erections, IMO....tough to achieve when you are devestated about your condition....this is where the VED, IMO, can bridge a person over to a better mental state b/c the person's physical state improves).

However, I imagine that if one experiences pain then that may or may not change the treatment plan.  From what I've learned about Peyronies Disease, pain, especially if it's experienced early, is not unusual, but the intensity and length of this symptom varies. Also, no pain may not equate to no inflammation - see many posts by George999. I never had much pain at all, only what I would describe as some occasional "discomfort" during the first six months or so.  Of course I'm absolutely no expert with this condition...or any health condition, but in light of that reality, I agree with your proposition that generally, bodily pain is the body's way of telling you not to do what causes the pain...

...but, I'm thinking that Peyronies Disease may be an exception of some sorts (like physical therapy, right?).  In other words, use your penis as much as physically possible until the pain says stop - I'm thinking maybe try to distinguish between discomfort and pain, or funny feeling and pain, but, I'm thinking out loud on this point.

maybe in your case "doing nothing" is an extreme reaction??  Maybe a VED could be used to gently engorge your penis in a much more controlled environment as opposed to getting an erection...this way you could get "some" stretching....so, maybe you don't have to look at it as an "all or nothing" type deal.  I know my urologists believes that it is healthy to have regular ejaculations, for many health related reasons, so, by not using it, this may be one healthy benefit "doing nothing" deprives the body.

CF

[Old Man]

Note to all:

Just read Cowboyfood's post below. I totally endorse his thinking 110%. Why? Because during my long term bouts with Peyronies Disease, I have experienced just about every symptom that has been named on this forum. I have tried "leaving it alone'' for months and in one case over a year only to realize that things were getting worse.

So, I am an advocate for the term "use it or lose it'' as has been stated many times on previous posts on this forum. The daily engorgement of blood flow into and out of the erectile tissue can and will help with keeping ones penis more healthy. As Cowboyfood says, doing something can and will help with ones mental attitude and psyche. Keeping a good frame of mine about Peyronies Disease is the one thing that will help most. Believe you me, I went through many trials and errors to learn "the hard way'' that doing nothing is definitely not the way to go with Peyronies Disease problems

So, IMHO, the better way to go is get busy, do something - whatever you think might work for you, don't just sit and wait. The earlier you get into some form therapy the better off you will be in the long run. Waiting will only cause more problems that you may never recover from or get any relief at all.

The above is just my personal observations from having Peyronies Disease on a long term basis!!!

Old Man

[newguy]

Wise words. The 'leave it alone' advice some people receive is so bad it's offensive. Combined with the other common occurance you mention, where many men are too depressed or embarrassed to seek advice, we have vast numbers of peyronie's sufferers who are missing the biggest windows of opportunity to improve their condition.

A point has been reached where there is patient experience of success using treatments AND studies to back them up. People who take Pentox and use either VED or traction are taking very positive steps to limit the damage this condition can cause.

[cowboyfood]

... where many men are too depressed or embarrassed to seek advice, we have vast numbers of peyronie's sufferers who are missing the biggest windows of opportunity to improve their condition.

Newguy,
this is exactly the situation my uro described.  In his opinion, it's unfortunate and not unusual for men to be too embarrassed combined with depression that it prevents them from seeking help, and instead withdraw....resulting in a lost window of opportunity to effectively treat the condition -- early action with the VED and Pentox.  My uro likes to prescribe pentox, or something similar depending on a patient's health status.  

Funny, he told me to feel free to go from daily VED use to a lighter maintenance schedule if I wanted to, exactly the same advice that Old Man and Angus have been prescribing here for years.  Of course, I informed him that our forum vets concur with his advice.

CF

[Old Man]

CBF:

Maybe some day they will listen!!!

Old Man

[Fred22]

I think what you are all saying regarding "use it or lose it" is probably true, but my pain was so bad during the first year It was impossible to "use it".  Even now 4 years later, I still have almost daily pain and every time I start the VED therapy the pain increases.  

From all I've read, my case seems to be the exception.  In fact, I recently contacted one of the best specialists in the field of male sexual function (a doctor that is often praised on this forum) and I was told that having pain for this long is unusual, but not unheard of.  I was also told that this Dr. did not treat "predominate pain syndromes without something surgical to correct (ED, curvature, etc.).  I was told that my case was a "rare problem to this degree, but clearly known to exist" and that he would be back in touch after the AUA conference which was held last week.  In fact, he said he would speak with Dr. Levine about my case (while at the conference) and get back to me.  Rather discouraging but understandable.  Hopefully, I'll get some better news next week after he's back to work.

Fred

[SSmithe]

Thanks for your input on this.  For the record, I was not advised by my URO to leave it alone.  He recommends usage for sure.

[Sheldon]

I was just diagnosed by my family doc a few weeks ago. I have a lump but no other symptoms at all. My doc printed out a few pages from Wikipedia and did not even offer to refer me to a Urologist. He said nothing can be done til it get's worse. He did not suggest that there might be ways to keep it from getting worse.... FRUSTRATING.

It's been suggested by people on this forum.... that someone might be able to recommend a Urologist with Peyronies Disease experience if I reveal my location. I'm in Winnipeg. (Manitoba, Canada)

To be honest - reading posts on this site has only made me more concerned/worried about the future, NOT reassured. Does anything work? Does it ever go away on it's own? Is there anything I can be doing now -- while I figure out how to get a referral?

Your thoughts would be appreciated.  

[newguy]

Your doctors advice was unhelpful. There is no golden bullet, but as with any medical problems it's better to seek treatment earlier than later. Until a while go there had been very few positive peyronie's treatment studies, but a couple are out there now.

You should start taking pentoxifylline. Evidence of its usefulness is here and here . Print those off and take it to a urologist. If he refuses to prescibe it, he's not a good urologist. It's cheap, has few side effects and may well be of some use to you.

You should also explore using a medical grade VED (vacuum ercetion device). A recent study (here) shows it to be of use for many peyronie's sufferers.

Hopefully somebody can point you in the right direction regarding good canadian urologist.

[YMENOW]

I got the same "treatment" from my urologist here in NY.  Even later after seeing two specialists in the Mens Sexual Health field, they told me that there was nothing out there for me unless it got worse!  I finally listened to the Old Man who told me to order the VED and begin the Protocol.

While you are waiting and looking for a specialist, order a VED and begin the 26 week Protocol if the doctor told you that you had Peyronie's.   The VED Protocol helped me physically and mentally.


ymn

[George999]

If you are in Winnipeg, you might consider journeying down to Chicago to see Dr Levine.  He is a noted Peyronie's specialist.  Probably not covered by Heath Canada of course, but it would probably not be extremely costly.  You would need a referral from your uro.  You would need to be firm and direct in requesting one as in: I want a second opinion from a subject matter expert.  On the other hand, hopefully some fellow Canadian can PM you with the name of a more up to date doc in Canada who prescribes Pentoxifylline.  They have got to be out there, its just a matter of finding them.  - George

[mike67]

I have sent Sheldon a message and can direct him to a Peyronies Disease specialist here in Ontario. Also far from Wpg. but possibly his office can supply Sheldon the name of one of my Urologist's contacts closer to WPG.

[LWillisjr]

Thanks Mike67,
I was going to suggest to Sheldon that he contact you but you beat me to it  ;-)

[BrooksBro]

I with my (now former) urologist had been more aggressive when I first noticed a small (pea-size) lump.  All I got from him was "take vitamin E, Rx anti-inflammatory med, wait and see."  While I waited and watched, I saw the lump grow.  Not that it would have done that with treatment, but now it is too late to ever find out.

You have received good advice.  It is up to you to follow up with someone knowledgeable and willing to treat your condition.  It can get worse, and there are enough personal reports posted in in the different boards (Improvement is just one) that it can get better.  

There IS hope, and that hope is found in using the time-proven treatments and medication.

[Tim468]

"Thank you for the response Tim, and to everyone else who has reponded and taken it upon themselves to private message me, the support on this forum has been phenomenal.

Tim, could you explain to me how the VED is able to remodel tissue? Does the negative pressue cause the plaque to be broken up? I'm still foggy on how exactly this works."

The VED is to remodel by stretching, much the same way that progressively stretching out an earlobe can finally allow a larger gauge ring to be placed in the hole.

It is not clear if normal tunica is stretched, or if the scar is stretched, or both. Whatever the mechanism, many of us have maintained or regained length and girth by stretching with the VED. Similar results are now in the literature for the FastSize and similar devices.

"So far the suggestions have been Pentox and Trazodone. I am also considering starting 600mg/wk Testosterone Enanthate, and Proviron 15mg PO QD ....I'm a little hestitant to use an SSRI for erections"

The trazadone is technically an SSRI, but Trazodone acts predominantly as a 5-HT receptor antagonist; the   effects on serotonin reuptake is relatively weak. It is a slightly sedating medication that used to be the number one drug for ED until the invention of Viagra. That was because of it's tendency to improve blood flow to the penis. The idea here, though, is that regular erections maintain health of the penis better than not having them (either via blood flow effects or via stretching regularly).

Some here postulate that the VED acts by increasing blood flow - this is speculation. The fact that the stretching devices work as well suggests the effect of the VED is mechanical. And, the amount of stretch from a device is greater than that of an erection - that is the point.

Using testosterone to increase erections is way overkill and runs the risk of causing infertility.

Using GH to get erections is similarly risky, and completely unproven.


I would get the VED to start working the penis without it being tied to your arousal - which is liberating. Many men here report improved libido simply from getting involved in getting better. Vitamin E and PEntox make sense - as does getting a doc to prescribe it!

Tim

[JimRaynor]

I have Peyronies Disease, was diagnosed by my uro maybe a year ago (not even sure of the time line). Started out with an hour glass shape, but it has progressed to about a 40 degree bend, and I fear it may be still progressing. No ED, except for perhaps some psychological. I am almost certain mine is trauma in intercourse due to some particularities that aren't worth going into atm.

edit: Maybe it would be helpful to add that I am currently 33.

I had no idea until I stumbled upon this site that there was ANYTHING to be done. God bless all of you who obviously put time into this.

Normally I would spend more time digesting the contents of the site, but I would like to get started on something.


Ideally I would like to try multiple attacks, nutrition, pentox, VED etc... but am soliciting suggestions.


As far as VEDs, which I would def like to try, what should I get? It looks like the most recommended is currently not available?

Anyone know of someone decent in the Houston area whom I could see? The uro I saw was obviously a joke, and basically said "nothing works, unless it gets so extreme you can't have sex, then we can try the nesbitt (Sp?) procedure"

What else should I be doing (reading, seeing, hearing, learning?)

Sorry for the rambling post, little hard for me I guess (no pun intended).

[Old Man]

Jim:

At the moment the Vitality OTC three cylinder manual model VED is no longer available unfortunately. The Vitality OTC one cylinder manual model VED is available from these two sources:

www.fitzz.com   and   http://www.americandiabeteswholesale.com/-strse-1025/Encore-Manual-Vacuum-Erection/Detail.bok

Open each link and go to the men's health products to locate the above VED. Both are priced about the same and are available without an RX. If you get the one cylinder VED, go the VED board on the home page and select the one cylinder protocol that member JackP has posted in the sticky posts at the top of the VED board page.

Feel free to ask any and all questions about VED or ED therapy and someone will be glad to assist you in any way for answers and/or suggestions.

Sorry that you have joined the "Peyronies Disease family" and hope that you realize some relief in the future.

Old Man

[JimRaynor]

Thanks for the quick response, are there no other three cylinder models worth pursuing?

[JimRaynor]

I should add that Jim pseudonym.  

[JimRaynor]

Forgive the multiposting, I usually have better net-etiquette.


Old Man, I have read a tonne of your posts so far (still reading). Some of your posts seem to allude to you having had "bouts" or having dealt with this for a long time.

Do I correctly assume from this that it is the type of disease that you can treat the symptoms, but they will be ever present, and really I am just keeping them at bay?

Thanks again for all your work, you (as well as many people on here) are of that rare breed that put their time, talent and treasure into something that actually makes a difference in the lives of others.

[Old Man]

Jim:

Yes, I have had Peyronies Disease symptoms for around 57 years now. First getting them after a sexual encounter going bad at the age of 24. And yes, the symptoms have gone and come back several times over those years. Each bout was overcome by some form of treatment.

The final episode/bout came after my radical prostate surgery in April 1995. I was rendered totally impotent by that surgery. Several weeks after the surgery, maybe months as I wore a catheter for 32 days after that surgery, the curves and bends came back along with some plaque. 12 Verapamil injections only gave me more plague and nodules.

Anyway, I tried many treatments and therapies over the years and finally the VED was prescribed for the impotency. My uro and I worked out the one cylinder VED protocol for my Peyronies Disease that JackP/Angus has put in the VED board under that title. It can be used successfully to overcome Peyronies Disease symptoms if followed carefully and with moderation of the vacuum pressure.

Old Man

[crashbandit]

Acetyl L-Carnitine - Is 1 gram a day on an empty stomach good enough? Or is 2 grams the only way to go? Should I really be thinking about taking ALA with ALC? I picked ALC over glycine propionyl L carnitine, L- citrulline and just regular old L-arginine because it's what george999 said is the next best to pentox. The reviews for ALC were also awesome on iherb.com and people commented that it's great for a mental boosts which I think I need abit too.

Vitamin E - 400 UI or 800UI daily? Does Vit E deplete Vitamin K which can cause more scarring? Did I read this correctly? probably not... I highly doubt this dose of Vit E can cause any difference.

Trazodone - I'm just gonna start out with a 25mg dose, which is very small. I chose this because it might help my ongoing downer mood and it's great for erections and blood flow. It's also very safe and well tolerated.

FYI, I'm 29, 155 lbs and have not been diagnosed with peyronies. Doctor has even confirmed this by saying he can't see anything wrong and wouldn't even refer me to a Urologist. My penis is achy on the left side, worse at the base but also along left shaft and into the head abit. I also purchased a vitality OTC manual pump system which I plan on using daily at very low pressure, I'm all about slow and steady now.

It's not a bad pain at all, just a low dull ache, my erections are also not painful at all. There is also no banana curve, just alittle deviation to the left side, like a \. I think what caused my symptoms is sleeping on my stomach and hence on my night time erections. Symptoms have persisted for 6-7 years and I hope to eliminate this cronic ache with my plan of attack.

Also one night during sex my girlfriend was going cowgirl style and rocking back and forth on my pelvis and then I heard a loud pop and felt pain and lost the erection. That was not cool and quit sex for one month after that as my erections were weak and it was painful. This aggravated my original problem I think, the same problem I have now.

Very sorry for the long post but just a few general concerns. Once I start this regime, is consistancy a must? Or can I stop taking any 3 of them at any time or should I wien myself off them? I hate the rollercoaster effect with supplements sometimes, will I benifit a consistant steady affect? I hope so... One last thing, are any of these things an anti-inflammatory? I don't want to take anti-inflammatories Cause I'm getting proliferate shots in my sacroiliac joints for lower back pain and don't want to interfer with that.  

Thanks so much

[BrooksBro]

In my opinion and experience, taking Vitamin E for peyronies is a waste of time and money.  I did 800 IU/day (GNC Isomer E) for neary a year without any improvement.  Your experience may be different.

[George999]

At this point I know of ONLY three oral treatments that have ANY research behind them showing that they help with Peyronies:

1.  Pentoxifylline
2.  CoQ10
3.  Acetyl L Carnitine

If anyone here knows of any others, feel free to add them.

Needless to say these are at the top of my list for treating my disease.

I also recommend repleting Vitamin D to optimal blood levels and taking plenty of EPA/DHA since their is a lot of research backing the general health benefits of these two substances.  Everything else is somewhat window dressing.  - George

[slowandsteady]

I haven't heard of E depleting K, only of alpha tocopherol depleting gamma tocopherol (both in the E family; unfortunately many cheap supplements only contain alpha).

I would add curcumin to that list, taken in oil. I like olive oil since it's a long chain fatty acid that goes through the lymph system.

[crashbandit]

At this point I know of ONLY three oral treatments that have ANY research behind them showing that they help with Peyronies:

1.  Pentoxifylline
2.  CoQ10
3.  Acetyl L Carnitine

If anyone here knows of any others, feel free to add them.

Needless to say these are at the top of my list for treating my disease.

I also recommend repleting Vitamin D to optimal blood levels and taking plenty of EPA/DHA since their is a lot of research backing the general health benefits of these two substances.  Everything else is somewhat window dressing.  - George

I'm staying away from the pentox because I don't think I have peyronies (knock on wood) and suppressing my immune system would achieve no benifit for me. Also it sounds like an anti-inflammatory, likewise the C0q10. But if things progress or I'm not happy with my attempts then I can always reconsider them.

I'm going to check out the EPA/DHA now, is that fish oils? Can you recommend a product for EPA/DHA please George? Preferably from iherb.com as that's where I'm ordering my ALC from.

I think I'm going to make an appointment with a good Naturapathic doctor for a complete blood workup for Vit D and everything else. What would you suggest George for a complete blood workup?

Brooksbro - Yea, I'm not placing much hope in the Vit E either, but already purchased a huge bottle for like 20 bucks so why not.

Slowandsteady - What is curcumin? Can I get it off of iherb.com? What is it good for?

Thanks for the help everyone

[UK]

CoQ10 in the study dealt with Early Chronic Peyronies Disease.
I assume the definition of this is still in the inflammation phase - right?
Is there any value in trying CoQ10 in longstanding Peyronies Disease anyone?

[George999]

I haven't heard of E depleting K, only of alpha tocopherol depleting gamma tocopherol (both in the E family; unfortunately many cheap supplements only contain alpha).

High-dose vitamin E supplementation increased PIVKA-II in adults not receiving oral anticoagulant therapy. The clinical significance of these changes warrants further investigation, but high doses of vitamin E may antagonize vitamin K. Whether such an interaction is potentially beneficial or harmful remains to be determined.

There appears to be a tissue-specific interaction between vitamins E and K when vitamin E is supplemented in rat diets.

The mechanisms by which vitamin E interferes with vitamin K activity, especially blood clotting, are not known, but hypothetically this interference may involve metabolic pathways.

An increased risk of bleeding has been observed with coadministration of vitamin E and warfarin, with an increased PT due to the depletion of vitamin K–dependent clotting factors. This does not occur in healthy individuals with normal vitamin K levels.

I could note more examples but hopefully the above will suffice.  The whole issue is poorly understood, but there are multiple problems associated with Vitamin E intake that magically disappear when Vitamin K is added to the regimen.

I'm going to check out the EPA/DHA now, is that fish oils? Can you recommend a product for EPA/DHA please George? Preferably from iherb.com as that's where I'm ordering my ALC from.

Nordic Naturals is generally the highest regard brand in fish oils.  The iOmega brand also looks good to me.  You want something that is highly concentrated AND clean.  I am currently using the Life Extension brand.  Iherb may carry that, I don't know.

I think I'm going to make an appointment with a good Naturapathic doctor for a complete blood workup for Vit D and everything else. What would you suggest George for a complete blood workup?

My suggestion would be that you follow the advice of the Naturapath.  That person will be better equipped to suggest possibly useful testing than I am.  In general, in terms of follow up treatment, I see nutritional supplements including herbals, hormone therapy, and proven off label use of prescription drugs as *potentially* beneficial treatments.  Acupuncture less so and I would avoid homeopathy which I see as extremely theoretical and lacking of evidence.  But getting your serum levels of Vitamin D up to 40-60ng/ml should be VERY beneficial for you.

CoQ10 in the study dealt with Early Chronic Peyronies Disease.
I assume the definition of this is still in the inflammation phase - right?
Is there any value in trying CoQ10 in longstanding Peyronies Disease anyone?

I can only say that my case is far from "Early Chronic", and I am seeing clear benefit.  Remember, not all of those in the study benefited, so benefit is not guaranteed.  But SOME in the study clearly did benefit which make CoQ10 a rare opportunity for *possible* benefit.  The Ubiquinol form is pretty much mandatory for those over forty since the older one is, the less efficient their bodies are at converting Ubiqunone to the biologically active or "reduced" form which is Ubiquinol.  CoQ10 is an essential factor for cellular health and thus for tissue healing.  Older people tend to be deficient in it for the very reason cited above.  Certain prescription drugs are also notorious for interfering with it and many of these just happen to be commonly used by guys who contract Peyronie's.  I see a potential connection here which makes me all the more excited as to the long term healing potential of Ubiquinol.  Its readily available without prescription in much of the world, but, alas, it is also very expensive.  But the research, limited as it is, is still there, which makes it a no brainer for me.  Your mileage may vary depending on what individual factor are involved in your particular case of Peyronie's disease.

[slowandsteady]

Point taken on the E-K interaction, though again the researchers are using alpha tocopherol by itself. It is certainly a good reason in my mind to avoid taking alpha tocopherol by itself. I'm switching to palm oil.

Vitamin K comes in K1 (phylloquinone, mostly from plants) and  menaquinone-4 (mostly from animal sources like brain, marrow, and organ meats; also mk-7 from fermented vegetable sources). It may be the case that K1 is only important as a precursor for bacterial fermentation to K2-MK4 in the gut. I take mk4 daily and mk7 weekly and eating leafy greens.

I think it likely that all of the oil soluble vitamins (A, D, E, and K) interact (see discussion here) in complex ways that aren't understood yet.

[sangha]

Old Man,
Thanks for your reply to my post.  I have read about Dr. Herazy's manual stretching method.  Is there any way to find out if, (or how well), it works?  I'm guessing that some
of the forum members have tried it.
Thanks,
Zeppo

I'm doing it

[Old Man]

sangha:

OK, sounds like you have had success with the stretching method. Would you like to give your experience with this in somewhat detail so that the members on the forums could have the benefit of it?

Old Man

[hornman]

Despite 2 yrs. of recommended supplements (including coenzyme q10 for the past 4 weeks) things are deteriorating.  My unit is very sore all over with an erection.  No ED problems.  If anything it seems too hard and I can feel the heat from Inflammation.
My online ordered Pentox should be arriving any day now.  I hope it makes it through customs.

[sangha]

sangha:

OK, sounds like you have had success with the stretching method. Would you like to give your experience with this in somewhat detail so that the members on the forums could have the benefit of it?

Old Man

Been a two months, bit early really but some improvement seems to be there.  I'm combining it with Genesen Acutouch pens.  I've used them to work on one scar which seems to be changing for the better so far but you know how difficult to measure these things are.  

[George999]

So, you are currently taking 100mg of Ubiquinol twice a day and it is not seeming to be helping you?  - George

[newguy]

hornman - Sorry to hear about this. Your plan to get on pentox is a very good one.  I say stick with the coq10 too. A month might be too short a period to know if something is useful.

[hornman]

Thanks Newguy.  I'm going to stick with it for at least a year.

George - Actually I have been taking 50mgs ubiquinol twice a day and 100mgs ordinary Q10 twice a day.
Do you think it would be worth it to try upping the ubiquinol dose?  It looks like they usued ordinary Q10 in the study.

[George999]

I would try 100mg Ubiquinol 3X/day for a month and see where that gets you.  I experienced pain relief very quickly with Ubiquinol, so either it will work for you or it won't.  But I wouldn't fool around with Ubiquinone at this point if it is not getting you anywhere this regard.  In the long term, if you are under 40, you should probably be able to get along with the Ubiquinone, over 40 Ubiquinol is the only way to get there.  But even if you are under 40, your body MAY not be successfully converting enough Ubiquinone, so I would give the Ubiquinol a one month try just to see what happens, then you can make a further decision from there.  - George

George - Actually I have been taking 50mgs ubiquinol twice a day and 100mgs ordinary Q10 twice a day.
Do you think it would be worth it to try upping the ubiquinol dose?  It looks like they usued ordinary Q10 in the study.

[hornman]

OK George.  I'll give it a go.  I'll let you know how I do.
Incidently,  I did experiance a turn for the better with a bleeding gum problem so I think I have been absorbing at least some of the the Q10.

Thanks,
Bill (Hornman)

[crashbandit]

sangha:

OK, sounds like you have had success with the stretching method. Would you like to give your experience with this in somewhat detail so that the members on the forums could have the benefit of it?

Old Man

Been a two months, bit early really but some improvement seems to be there.  I'm combining it with Genesen Acutouch pens.  I've used them to work on one scar which seems to be changing for the better so far but you know how difficult to measure these things are.  

Can you explain your stretches in detail please? I'd like to possibly try them. Thanks

[sangha]

sangha:

OK, sounds like you have had success with the stretching method. Would you like to give your experience with this in somewhat detail so that the members on the forums could have the benefit of it?

Old Man

Biggest problem is that anything I do has no Baseline to measure against.  As well l am trying more than one treatment.  I really do wonder sometimes if this condition just takes it's own course and we go with it.   I have not read the fine print on this forum so won't mention names but bought a DVD on manual (by hand) stretching because it sounded sensible.   Given that I didn't know what if any trauma caused it, l didn't want stress it at all.   I also had a need to explore and understand the scars, this method made it ok and even beneficial to do that.
So l just do what the video says.
It have to say that this forum has both educated and freaked me out. But the supplier of the DVD recommended against sticking needles in your penis, using mechanical devices and other things that make you wince.   That line of thought made sense to me.  Then I discovered this forum and read about some who have indeed been made worse by needles and devices and it made even more sense.
My condition appeared last Dec and proceeded quickly to a manageable bend (20) and ED problem. After starting supplements, stretching and magnetic pens it hasn't got worse. Maybe just a bit better.

Been a two months, bit early really but some improvement seems to be there.  I'm combining it with Genesen Acutouch pens.  I've used them to work on one scar which seems to be changing for the better so far but you know how difficult to measure these things are.  

Can you explain your stretches in detail please? I'd like to possibly try them. Thanks

[jamesmetairie]

i,ve got peyronie,s for a few months . curving upward at the head. i don,t notice any pain.a few days ago i had duplex and the dr. prescribed pentox and vitamin e and a supplement and 'traction". i can,t see how i,m gonna be able to wear the traction 4 hours a day for many months .and from the way i read there,s a good chance i,m gonna damage my penis trying to install the dang thing. what,s the chance that the condition will not worsen? personally i can live with it the way it is. what,s the chance that just by taking the oral meds it will improve? fingers crossed.

[crashbandit]

I have no experience from using the traction but from what I've read, it's not ideal for curves right next to the glan. I think VED (penis pump, theres a sub-section expecially for VED) would be a better option for curves right next to the glan. Also I'd be careful with using alot of vit A, as this will lower vit D. I think vit D is alot more benefitial for Peyronies Disease then vit A. I wonder why he would prescribe vit A for Peyronies Disease?  

[jackp]

James

Your doctor is way behind times. The FDA has taken the Fast Size Penile Traction Device off the market because it is not FDA approved.

IMHO go to the VED section that is a much better option and it only takes a few minutes a day.

Jackp

[George999]

Jack,  These doctors are recommending traction largely because Levine recommends it.  I don't use either method myself, but for the life of me I can't see what advantage traction has over the VED.  The VED has certainly been proven for ages around here and as far as I know it has no issues with the FDA and far less risk of serious damage from misuse/overuse.  Everytime someone posts about what their general urologist, (half of them *claiming* to know all about Peyronie's), is telling them to do or not do, I brace myself for what I'm going to hear now.  And occasionally, even the experts like Levine and traction, surprise me.  Everything I've read suggests to me that the VED is the better approach of the two.  - George

[Nixxysarge]

Hey,
Im a 22 year old male living in the uk! i have just plucked up the courage to visit my doctor, my concerns were that my penis bens upward about 30 degrees, and a little to the left. The doctor has reffered me to a urologist on the NHS (woop woop)
Id just like to know a few facts.. iv had a bent penis as long as my early teens, and have been sexual acctive since i was 13 and can remember no specific injury.. im sure over the last 9 years there has been no change in the bend, it hasnt worsened, therefore im sure its 'stabalaised'... i would just liek to know my options, iv heard horror stories of loosing inches after having surgery.. people saying about traction devices and ved's.. does any of it work?
Iv just came out a long term realtionship and am seeing a new girl, im a bit worried about having sex with her for the first time.. my previous girlfriend never commented on it.. and could pleasure her no ends! but its alwys in my mind..
if i was to have surgery how long would i have to wait for the op on the NHS? would you reccomend to go privately? as u can understand i just wanna get it sorted!
Any one can help me and ease my mind a bit i would be greatful, its on my mind a good 90% of my mind at the moment
Cheers  

[GS]

Nixxysarge,

All I can say is "if it isn't broke, don't fix it".

Seriously, if you are not having problems and it has been that way since you can remember, I would leave well enough alone.  But, if you wanted to give a VED a try, it can't hurt anything as long as you don't over do it.

GS

[Brightdog]

For that much of a bend, which is still quite workable, you should try other options before you even consider suregery. Seriously - the surgery should only be a very last resort - an attempt to salvage something from an otherwise unworkable situation. Read my post in the Members Stories forum and you'll get an idea.

[user of no names]

well i am new to the forum so here it goes...
i am 30 years old and have had peyronies since i was 14.I hurt my penis during masturbation and further injured it at the age of 22.My penis bends and twists to the right.I can't have sex as its to painful.I have seen multiple urologists with one recommending an implant at the age of 23, this was the head guy at the U of MN who knew nothing about alternate treatments.I have what is called a sub-clinical fracture with no noticeable plaques.I eventually went to the mayo clinic and was put on pentox.I took this for many years and it did help until I had issues with my stomach.I am trying to get back on it but seem to have side effects.This whole thing has taken quite a toll on me as I am depressed quite a bit and sometimes think of ending it all.Hopefully the physcologist I am seeing can help with this.This forum has definitely helped me deal with the issue.I am trying to buy a ved with 3 chambers but it seems to be a pain.I did however make a new appointment to see the urologist at the mayo as i haven't been there for 5 years.Hopefully God willing i can find a way to deal with it.

[newguy]

I replied to one of your posts elsewhere. However, I notice here that you're considering the VED. I would definitely advise you to do down that route, especially if you are having problems with oral treatments due to your stomach issues. It's certain an approach that might see you making improvements.

[newguy]

How's it going with the COQ10, hornman?