TREATMENT FOR CONGENITAL CURVATURE

[RedSunn]

My son was diagnosed with congenital curvature so severe that the doctor said that sex would be impossible for him.  He curves down and twists to the left.  One side is 7 inches long, the other is 5 inches long.  I was wondering if there are treatments alternative to the nesbit procedure or shortening his penis.  He is extremely upset about having to hace some of his penis 'cut off' in order to 'fix it'.  The doctor said that any other surgeries like grafts or whatever can go very wrong and that permanent erectile dysfunction could occur.  What about dmso treatments?  Is there any verifiable evidence that it affects curvature in a positive manner?  I also saw that dmso can be toxic or permanently detrimental if used improperly, how would you know how much to use and when?  What confirmed positive and negative results can happen when using dmso?  I saw something about skin clearing that using dmso can make your skin translucent while using it.  Is this permanent or long term?  Please help, we have been suffering through this for years, first doctors poo poo'd him, then sent him to urologists who had no idea what to do with him, then we got this doctor who seems to be educated and does a lot of penis specialty surgeries, but seems unpersonable when it comes to the aprehensions of a teenage (18) boy.  His entire life seems to be on hold until he can get 'his biggest problem fixed'  because he will not have relationships with people, especially girls because of it.  I know this is a mental thing that needs addressed, but he does not want to have to deal with a girl finding out about it or having to tell her, so he simply stays away.  We are making the arrangements for the nesbit, because he sees no alternative to it, and his health insurance to cover the surgery most likely runs out in June. PLEASE HELP!

[LWillisjr]

ReddSunn,
I sent you an email as it would be too much to reply and post here.

[Tim468]

Redsunn

Sorry to hear about what you are going through. He is lucky to have you fighting for him.

Going to one of the best doctors is probably worth your while.

If he is a student, he can stay on your health insurance policy - usually. He may have to get a COBRA coverage (expensive, but worth it- but watch out for pre-existing conditions exclusions!) to go forward if this is not the case for you.

There are no data on almost ANY of the modalities here that are non-surgical (ie the VED) and certainly not for congenital curvatures. Most of us think that the VED, for instance, will not help a congenital curve, but who knows? It has probably not been tried. Simple traction may be better for him and make him a usable penis he can have sex with.

If time is of the essence, think about the other possible outcomes - doing the wrong thing in a rush and regretting it forever. Try to focus on getting information, getting busy learning, and getting him into therapy so he can learn that he is so much more than his penis. For one thing, a lot of us with curves can still have sex, orgasms and even intercourse without difficulty (I remember being told I "might have to use vaseline to get it in" by a Dutch born Urologist)(not the most warm and fuzzy personality at all!). Never happened.

Hang in there.

Tim

[thompson72]

RedSunn,  

It's been a long time since I've been back here, but I dug up my password b/c I wanted to leave you a message. I am/was in the same position as your son, except I'm now 23 and have been dealing with this for a long time.

I went through the usual doctors, to specialists, to fighting tooth and nail with my insurance company, and ultimately ended up at the Mayo clinic laying on an operating table for diagnostics. I've had needles stuck in it, pictures taken, a rude doc looking down on me for being so young (I was 18 at the time) and my pride entirely taken away. And I too continue to miss relationship opportunities, which is why I understand why it is SO hard particularly for young people who experience this before ever getting into a relationship. I understand. I have been there.


The first thing is, I think your son needs to be very honest about whether it is actually congenital or is peyronies disease. I say this b/c all my doc's 'diagnosed' it as 'congenital curvature' b/c of my young age (18 when I saw the docs). And b/c I had a hopelessly judgmental GP, I didn't correct him and only later did I tell the specialists/urologists that it was not congenital (And even then, I told them there was trauma, but didn't tell them how--embarassingly I had hit it on a bed while erect when I was young, ~14.) THE POINT IS congenital vs. peyronies are ENTIRELY DIFFERENTLY and first you need to find out if there was ever trauma. B/c you have to know what your dealing with. And that needs some tough honesty from him.

IF it is truly congenital, the length of 1 of the 2 spongy tubes within the penis is physically shorter than the other, most likely. This is akin to being short like Tom Cruise, there isn't much (read anything) that can really be done to make it longer. The only option for congenital (that I'm aware of at least!) is surgery such as a nesbit plication to shorten the longer side and prevent it from expanding so they are equal. Unfortunately, this takes away lot of usable length IMO, which is why I decided against it. And comes with risks like any surgery. (I literally canceled my surgery two days before it was scheduled. I came that close, but I simply KNEW in my gut that it wasn't right for me. It still makes me sick to think about. But others have had it, so see what they say.)

IF it is peyronies, then we are dealing with a scar that is not allowing one side of the penis to expand equally to the other. You can see why this needs to be approached differently. I've tried a lot of things (vitamins, infrared, traction, massage, etc.) and even read medical journal articles. Here is what I've learned from experience that helps:

1.) Use it. Achieve strong erections daily or at least every other day. The more the better. This brings blood into the tissue, which softens it and makes it more pliable, and also stretches the shorter side. (It's true penises become shorter as men age, proven fact, you truly have to use it or lose it.)

2.) Propionyl-L-Carnitine (PLC) This is very hard to find. But is the ONE supplement (aside from HGW) that truly does help. I used it after first reading about it tests in a medical journal. You'll see many, many people here talking about Acetyl-L-Carnitine (ALC), but ALC does virtually NOTHING compared to PLC to bring blood into the penis, which is what is needed. ALC will sharpen your mind and make you think more clearly (it's used for Alzheimer's patients and as a general supplement) but brings very little, if any, blood into the penis. PLC on the other hand, relaxes smooth muscle (e.g. muscle in your penis) and brings blood into it (I took 2g PLC daily, that is what was used in the study as well.) It brings blood into the penis even while flaccid so well that you will even feel a different 'hang' (more blood, heavier, bigger in flaccid state). THE NET EFFECT is that the blood sitting around and softening the scar tissue throughout the day, has a significant effect at making it more pliable. Then during erection, improvement in curvature can be seen. Not entirely at all, but enough to be hopeful and know PLC works. (For me, ~20-30 degree improvement, on a 90 banana-shaped curvature. Sorry for the graphic detail) Like a lot of things, this only works while you take it. And as a broke student, I ended up having to quit it b/c I couldn't afford an extra $30/month. (PLC is VERY hard to find. I found some at bulknutrition.com and capped it myself into 500mg capsules). Last, I looked, I haven't been able to find it. There is a new product called gPLC that I haven't tried yet, but may be worth a short. (gPLC is marketed to those with heart issues, as the heart is smooth muscle, just like the penis is as well. So you can see why it would work. Again, it works while you take it, but doesn't cure it and curvature will be back to normal when it is stopped. (Long term, I suspect that over many years this could permanently help curvature b/c it helps stretching into a longer state and over years (5-10+) cumulative effects would probably build up positively, I don't doubt.) Anyhow, PLC is great stuff.

3.) Horny Goat Weed (or Icarin, which is an extract of HGW) - straighter shape is guaranteed to be achieved when more blood is in the penis. HGW acts like a natural viagra and helps maintain stronger erections. If he does PLC 2g daily for two weeks, then took HGW and tested it during masturbation, I'd guaranteed that he'd see some positive improvement. HGW is helpful to take before bed for stronger nighttime erections and before any sexual activity, obviously.

4.) Massage --  So I have to explain this one. I had a scar on my arm from an injury when I really, really little. Today it is invisible. Our body's cells are constantly regenerating, old skins cells flake off, new skin rises to the top. This gives me hope, that the peyronies scar over time would be at least partially replaced with healthy cells. Also, I used to get deep tissue massages as an athlete, and the purpose is to break up scar tissue deep within the muscle fibers and release the fibers to perform better. Massaging the scar tissue between fingers very toughly (but not painfully or injuriously) should help break apart the scar tissue fibers over time. It also brings blood into the tissue, which, if you're seeing a pattern, is really truly the most (or possible only) beneficial means we have to make improvements on peyronies.

Work the scar tissue as often as you remember. Once or twice a day for 5 minutes is doable. But the more the better. You can't really overdo it. If the skin begins to hurt, back off, and I recommend using DermaE's all natural anti-scar gel on it afterwards, to keep the dermis healthy and be absolutely certain we aren't causing more scaring on the top layer. (That works REALLY well to prevent scarring BTW if you ever get a cut or scrap. Amazing stuff.)

5.) Nutrition - b/c the most modality we have IS our blood, we have to keep our bodies and blood healthy to put our bodies into a healing state. So alkaline and anti-inflammatory foods: vegetables, fruits, seeds, nuts, seaweeds, superfoods, fermented foods, lentils, legumes, whole grains, fish, etcetera. Avoid sugar, starch, dairy (except fermented like yogurt and keifer), red meat or excessive meat of any kind (it produces acidic byproducts during digestion). Also, supplement on vitamine-D and Omega-3. They're the two most important nutrients we're almost ALL deficient in. And if your son has even latent depression from this, they are a HUGELY beneficial at alleviating depression and will help him, or anyone, think more clearly and sharply.

6.) Cardio & strength exercises - being fit equates to having literally a higher volume of blood in our bodies. And with more blood in our system, when it's called upon for umm...recreational purposes, more blood means stronger erections. Stronger erections, means straighter erections. This is an important one.

Lastly, where I see hope for peyronies, is looking at success treating dupuytrens contractures, e.g.--needle apnuerotomy (sp?). Here is a video of a hand being cured and able to rest flat (it's hard to watch, but the result makes my heart sing) http://www.youtube.com/watch?v=-hdafYvrtJ8

This, I believe, is analogous to the Lariche technique and other 'plaque thinning' techniques for peyronies disease, which I think merits the most hope for treating peyronies.

God speed. I hope something in here helps you.

[Iceman]

thompson 72 - i found the PLC at bulk nutrition.com - so you really recommend this then do you - can you please give me a bit more information etc - if so I will order it -

has anyone else heard of this and tried it??

[thompson72]

http://www.webmd.com/vitamins-supplements/ingredientmono-803-PROPIONYL-L-CARNITINE.aspx?activeIngredientId=803&activeIngredientName=PROPIONYL-L-CARNITINE&source=2
http://www.rxlist.com/propionyl-l-carnitine/supplements.htm

Notice WebMD even specifically mentions peyronies so they have taken note of the studies. I can't seem to find via Google the original scholarly study that led me to try it the first time years ago (when I first joined the forum), but these links are a decent overview.

I forgot to mention, TAKE IT ON AN EMPTY STOMACH or you're wasting your money. It makes a big difference with this. I used to take 2g in the AM (wait 20-30 min before eating). And I've also tried 1.5g twice daily (in AM and before lunch or dinner, also waiting 20-30 min before eating). Though my preference, really, is a single dose in the AM so you KNOW your stomach is empty and then adding a 'booster' dose in the afternoon/evening on days when I remember and have an empty stomach or have a date or something that evening.

Give it a go for month or so. Hell, give it a week and I think you'll see noticeably better hang and blood flow and you might even be a bit hornier with the extra blood down there. Within a month of regular use (and especially if you pair it up with HGW! good pairing!) some improved curvature (this isn't a cure-all at all but it's the best I've found and we're trying to add together base runs of things that actually work IMO).

Let me know what happens! I'll check back in a month or so if not sooner. (Though I really don't check this often. I'm too busy.)

p.s. Bulk nutrition's is gPLC, and not the one I ordered before. I still can't find plain old PLC. I don't know what, if any, differences there are really between gPLC or PLC. gPLC didn't even exist on the market when I first tried PLC. I do know that gPLC is said to offer better absorption, but whether it's true or not, I don't know. I haven't seen comparison studies. But I love my PLC.) Now that I can afford this again, I'll be using gPLC. FYI, Vitacost has gPLC cheaper than bulk nutrition, NSI 1g, 60 caps, $20
http://www.vitacost.com/productResults.aspx?ss=1&Ntk=products&x=0&y=0&Ntt=propionyl
Even still it works out to $20/mo at 2g daily, which I know adds up.

p.p.s. store it in the fridge. PLC melts even at mildly warm temperatures.

[Iceman]

i bought gplc frm imed and you are right  - i can feel a diff - its fuller and seems more blood is going down there - i w ill keep you updated as i bought 1 years supply - i will try anything...

[GaryNC]

It is a difficult choice.  What do do?  I caused my own peyronies at an early age by being too rough about age 18.  Vacume traction with a small cylinder might help in his case to stretch one side more.  I bend to the right but not so bad as to stop intercourse.  I have been married nearly 30 years now with 4 children.  I did have to face showing my future wife my penis and discuss it.  It was difficult.  Watch his depression level. Still there are women who don't like sex or can not have intercourse, but would like to be married with kids.  He can father children still. Again there are other sexual methods outside of intercourse.

If he intends to remain single I recommend the military.  You are never alone and they have good benefits.  An officer after 20 years will never have to work again.  Enlisted guys must plan ahead and have a house paid for before they retire to have that security.  I was enlisted but get extra because I was diagnosed with sleep apnea.

My wife and I live on my retirement income now.  We had to give up our expensive Ut house though for a cheaper one here.  My 4 bedroom house 2 1/2 bath with 2000sf only 78K this year. We have only been here a few months.