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SDP

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My Story
« on: March 22, 2013, 03:18:03 AM »

I'm a male, 50 yr. old, divorced.

Kind of embarrassing how I think I got Peyronies Disease, but here goes...
About 5 months ago I was staying at a hotel that had a jacuzzi in the room and while taking a bath the feel of the jets felt good to my "noodle" and I enjoyed it there for maybe an hour. I also did the same thing in the hotel hot tub. Both very powerful jets and hot. The next time I got an erection, I noticed my penis was curved (about 20 degrees up). I decided to wait until my next physical to see a doctor about it, and when I saw the doctor last month, she referred me to a urologist.

After examination, the urologist said I had Peyronies Disease and I told him that I thought it was caused by what happened in the jacuzzi due to that I read that it can be caused by trauma, but he disagreed with me stating he thought it was just a coincidence. He said possible treatments are surgery, injections using a drug to be approved soon by the FDA but instances of eruption occurred, using a VED device, or not doing anything at all - it sometimes goes away by itself.  He did not prescribe any drugs and he could not prescribe vitamin E because I was taking a blood thinner at that time and I  think also maybe some of the other usual supplements can cause additional blood thinning. Regarding the VED, he said a representative of Augusta Medical came to his office once a month to show the device and answer questions, so I scheduled for the following week.

The rep. arrived with a 3 tube VED and explained how it work and recommended the manual vs. the battery operated, and the cost of almost $600, and it turned out my insurance wouldn't cover anything on it. Using some of the suggestions from this forum, I bought an aquarium gravel cleaner (clear tube about 2" in diameter and 8" long) and an electric powered aquarium air pump and after I arrived home I connected the two together and placed over my penis but it did not cause an erection. 2nd, I connected a brake bleeder from HF Tools on the gravel tube but no erection trying that. Finally, I then connected an air pump from an air mattress to it, and it wouldn't cause an erection either. I'm not sure it this is a result of trying the air pump for the mattress or not or a result of the Peyronies Disease, my penis muscles are not contracting normally when ejaculating and there is not much pleasure from doing so - it just kind of shoots out. Since I didn't have much of a "load", I suspected the problem may be low testosterone, but I had it checked and it the result was normal. Then I bought a product at GNC called Staminol Ultra since it contains many of the supplements that I've read some members of this forum are taking:

Amount Per Serving         % DV    
   Vitamin E (as dl-alpha Tocopheryl Acetate)       32.00 IU      107%     
   Thiamin (Vitamin B-1)(as Thiamin Mononitrate)       2.00 mg      133%     
   Riboflavin (Vitamin B-2)       2.00 mg      118%     
   Niacin (as Niacinamide)       25.00 mg      125%     
   Folic Acid       600.00 mcg      150%     
   Vitamin B-12 (as Cyanocobalamin)       8.00 mcg      133%     
   Zinc (as Zinc Oxide)       17.00 mg      113%     
   Selenium (as Sodium Selenate)       75.00 mcg      107%     
   L-Arginine       1000.00 mg      0%     
   Fenugreek Seed Extract (Trigonella foenum-graecum)       600.00 mg      0%     
   Mega Natural-BP Grape Seed Extract (Vitis vinifera)       300.00 mg      0%     
   Maca Root Powder (Lepidium meyenii)       100.00 mg      0%     
   Asian Ginseng Root Extract (Panax Ginseng)       55.00 mg      0%     
   Yohimbe Bark Extract (Paunsinystalia yohimba)       50.00 mg      0%     
   Horny Goat Weed Extract (Epimedium sagittatum)       50.00 mg      0%     
   DHEA (Dehydroepiandrosterone)       25.00 mg      0%     
   Hawthorn Berry Extract (Crataegus pinnatifida)       25.00 mg      0%     
   Ginkgo biloba Leaf Extract       25.00 mg      0%


Before I went to bed the 1st night after taking it I woke up with an erection for the 1st time in a long time and the next day I noticed a substantial increase in my load and it was more of a milky color. However, there was only a minimal increase in the contraction in my penis muscles, and only somewhat pleasurable. Maybe after continued use it will improve.

I've read that one of the causes of Peyronies Disease is trauma, which is why I thought the incident with the jacuzzi caused mine, until possibly tonight, when I read this:

"Sexual problems that may occur with beta blockers include a decreased sex drive, impotence, or an abnormal curvature of the penis. If you develop any sexual side effects while taking a beta blocker, let your healthcare provider know so he or she can recommend an erectile dysfunction medication or prescribe an alternative medication for the beta blocker."

I've been taking a blood thinner (warafin) and a beta blocker (atenolol) for about 5 years, so my concern is that maybe the beta blocker is the cause. I read another article that there was a study done that beta blockers do not work for their intended use (the reason I'm on the meds is because I have atrial fibrillation).  Based on those concerns, I went to see a cardiologist a few weeks ago and after the evaluation he said I didn't need to take either of the two meds anymore because my EKG was fine and that I was relatively young. Since then, there have been 2 instances when I felt my heartbeat was irregular and I took the beta blocker, which I keep a supply with me at all times. I feel that I didn't receive good medical advice because I was expecting to be prescribed alternative medications that didn't have possible sexual related side effects. I will be scheduling an appt. with another cardiologist for a 2nd opinion.

Other: My erections have a very slight pain and I'm able to have intercourse but only after using Viagra. My libido has decreased substantially since I've had the Peyronies Disease.

My plan now is to see a specialist in Chapel Hill named Culley Carson, who the urologist I saw a few weeks ago said is one of the leading Peyronies Disease doctors in the country who I believe will get me on a course of Peyronies Disease meds beneficial to me. Maybe I'll get a Bathmate hydropump - too bad they don't have jets like a jacuzzi tub :).

Questions:
1) About how much does surgery cost for removing the plaque?
2) Does insurance usually cover at least some of the cost?
3) Can unprotected sex cause Peyronies Disease (from contracting an STD)?
4) From the above, do you think the problems with the muscles not contracting properly are caused by the Peyronies Disease or do you think from  my experimenting with makeshift VED's caused it?
5) Does Peyronies Disease usually cause a decrease in sex drive even if can still get an erection?

Any constructive comments/suggestions appreciated.
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Hawk

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Re: My Story
« Reply #1 on: March 22, 2013, 09:02:11 AM »

SDP, Welcome to the forum.  I'm not too sure I know where to start.  I am a bit intimidated when I see a literary genius arrive on the forum  ;) ;D

The best evidence is that Peyronies Disease is an underlying genetic predisposition, that can be elevated by many other factors.  A few suspected ones are diabetes (even very early pre-diabetes), some beta blockers, stress, lack of sleep, smoking, low testosterone, Erectile Dysfunction (which is also associated with some of these other factors), and the list goes on.

When these underlying conditions build to the breaking point, the fibrosis process starts. Sometimes an injury tips the scale and triggers the event. Sometimes the scale is so delicately balanced that possibly a micro injury we don't even perceive tips the scale. Maybe it takes no injury because other factors have already tipped the scale.  So, your Jacuzzi experience could be a total coincidence, maybe not. If it triggered it however, that scale was likely to the brink of tipping and something else would have done you in and Peyronies Disease would have commenced.

Now about the VED.  I say buy a $600 3 cylinder VED or buy a $50 cheap VED but if you saw anything on this forum suggesting the use of aquarium pumps or air mattress pump please point it out and I will deal with it.  Our recommendation is for NO TYPE OF MOTORIZED VED .  Use ONLY MANUAL VED's.  You cannot possibly control any automatic VED to prevent aggressive over vacuum.  If we stop and reason together, we would conclude that if we think we triggered Peyronies Disease with aggressive play with a jacuzzi jet, how will we reverse it with aggressive experimenting with gravel vacuums and mattress pumps? If you are interested in a VED read the highlights of the VED board and ask VED related questions in that board.  When in doubt listen to Old Man who knows as much about VED's as anyone else you will ever have the opportunity to talk to.

I am going to assume that you read MUST READ BEFORE YOU POST - Information for new members - Peyronies Society Forums but if you did not, read it now and study it soon.  It needs to be your outline and game plan to get started in a responsible manner.

I don't want to out-do your post so I will stop for now.  I want to end by welcoming you to the forum and thanking you for the detailed information that we often have to drag out of new members a piece at a time.

Best Regards

Hawk

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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

SDP

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Re: My Story
« Reply #2 on: April 23, 2013, 05:07:07 AM »

Thanks hawk for your compliment, that I'm a literary genius. I'm just trying to find a cure for,
my penis.

Not sure if to get a VED, or a maybe a traction device,hopefully something will suffice. Hopefully I can improve it, better than 20 degrees,
anything would be better, for me. This condition has affected my libido, my penis used to be my hero.

Trying to find the right meds, maybe some maca or pentox, will help me get off my rocks.

---------------------------------------------------------
Anyway, all kidding aside...

I have read a few posts in the forum about promising results using hot water for straightening a curved penis. I'm considering buying a traction device and using it a bath with hot water after taking a cialis or viagra pill. I saw in another thread where you wrote that a flaccid penis is inserted into a traction device. Since my penis is curved only when erect, how would a traction device help straighten the curve? Do you see any potential problems with inserting an erect penis in a traction device and the soaking in a bath with hot water?
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Hawk

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Re: My Story
« Reply #3 on: April 23, 2013, 11:07:59 AM »

I saw in another thread where you wrote that a flaccid penis is inserted into a traction device. Since my penis is curved only when erect, how would a traction device help straighten the curve? Do you see any potential problems with inserting an erect penis in a traction device and the soaking in a bath with hot water?

Picture a piece of scotch tape on a deflated balloon.  The scotch tape approximates scar tissue or plaque as it is called.  The balloon is not distorted until it is blown up and the tape restricts the expansion.  I you however stretch the deflated balloon the tape will be the point where all the traction is focused since it is the the only part of the balloon that resists stretching.  When you blow the balloon up to full size all of the material stretches.  When stretched deflated the traction force focuses on the restrictive plaque (or tape n our example).

Traction is not advised for an erect penis.  In addition, for traction to be effective it must be worn 4 or more hours a day.  You cannot go around with an erection in traction all day.  It is utterly impractical for the long haul.  Healthwise there is no reason not to use MILD heat while in traction.  I usually used it right before traction.  Using water as a heat source during traction, may raise the issue of potential damage to the foam sleeve, springs and moving parts.  Infrared heat from a lamp or a heat pack may be better.

The key to heat is to keep it under 104 degree F or it can kill tissue.
Logged
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums
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