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jnbarizona

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First Post, Story, Questions, Recommendations
« on: November 16, 2013, 05:49:13 PM »

Hello everyone, I would like to introduce myself and tell my story.

I am 37 years old. In January of this year, 10 months ago, I received a blunt force trauma to my groin. There was bruising at the base of my penis. I didn't think too much of it at the time, I assumed I'd be ok, and I'd heal up fine. As the weeks went by, I started to develop difficulty getting an erection, and there was pain in my penis, like a dull aching pain. I went to 2 different urologists, they did absolutely nothing, except take my money. My medical insurance company also refused to pay for the visits. The pain in my penis lasted about 5 months, during this time my penis would also make strange shapes. One particular morning my penis was in a hourglass shape, but most of the time it had a bend to the left and down. I could not get an erection at all, except when taking Cialis and Viagra, and even then it was difficult to achieve and maintain. In the past, a small dose of Cialis would have me erect for 3 days, now it barely had any effect at all. When my penis is flaccid, it is severely shrunken(shriveled) up, and feels rigid, it's not the spongy soft bendable texture it's been my whole life. I then decided to try another urologist, this time I found one who knew a little bit more, although he was still limited in what he could do for me. He diagnosed me with Peyronie's Disease. During his exam(the previous 2 uro's didn't even do an exam), he said he could feel a small lump on the left/underside of my penis, which I can also feel. It made sense that that's where the scar/plaque is, because that's where my bend was. He wasn't able to provide an ultrasound, so I did some checking around on my own, and I went to the Mayo Clinic for that. Unfortunately, I was not treated well at Mayo, the radiologist was smiling the whole time, like he though it was a joke, when I tried to ask him questions, he told me to ask my Urologist, not my radiologist. They were supposed to inject me with something to induce an erection and check the blood flow, but the medication they had was expired, so I didn't get a proper blood test. My penis was also severely shriveled up when the ultrasound was performed, so I wonder if that prevented me from getting a thorough ultrasound, because the test came back negative for any plaque. That was a few months ago. Right now I'm taking the following:

Pentox, Ginseng, Ubiquinol, Testosterone, Cialis, Viagra, Vitamin D, DHEA, Vitamin E, L-Carnitine and a balanced diet. I don't smoke, I don't drink much alcohol and I'm not overweight. Still despite all these supplements that I'm taking daily, my penis is lifeless, it doesn't even make those strange shapes anymore. It's like it's dead, I can't do anything with it, it's shriveled up and small. The pain is gone, but so is basically all the feeling, even the Cialis and Viagra have very little to no effect at all, it's like I'm just wasting money on all this stuff. I've been having more and more suicidal thoughts. My business that worked for 12 years to build is falling apart. There are no more women in my life, I'm alone now.

Here's what I'm wondering, and looking for feedback on... Let's hypothetically say my ultrasound was accurate, and there is no scar tissue or plaque, does that mean it's some kind of tissue or nerve damage? Should I get another ultrasound done somewhere else? If so, where? I'm willing to travel anywhere on the West Coast of the USA to get a thorough test. Can anyone recommend a doctor for me? Are stem cells the answer? I don't know what to do, or who to talk to. All I know is I've spent a lot of money, and nothing has improved. Any help would be appreciated.

Thank you,

JNB

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james1947

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Re: First Post, Story, Questions, Recommendations
« Reply #1 on: November 16, 2013, 10:27:05 PM »

jnbarizona

Sorry to hear about the incompetent urologists you have faced, but you are not alone. Almost all of us have had such experince.
I was adding VED to your treatment.
Regarding doctor, San Francisco, CA - Dr. Tom Lue
UCSF Medical Center. He is a male sexual health specialist urologist…one of the best Peyronies specialists in the US!!!

Welcome to the forum
James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

skunkworks

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Re: First Post, Story, Questions, Recommendations
« Reply #2 on: November 17, 2013, 02:59:32 AM »

In my situation, it took over a year for 90% sensation to return to the head of the penis
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This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

Knight

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Re: First Post, Story, Questions, Recommendations
« Reply #3 on: November 17, 2013, 11:17:29 AM »

jnbarizona

I am also very sorry to hear about your struggle finding a competent urologist. I went to 3 before I found anyone who even seemed to know what "I" was talking about when discussing Peyronies Disease. Ironically the doctor I did find (Dr. Housman) who did seemed competent was at The Mayo Clinic. I am furious to hear how you were treated by your radiologist. The man should be fired and I would make his attitude and lack of professionalism known to those in power at The Mayo Clinic.

For the record I m taking everything you are taking with the addition of the VED. I do not have serious Erectile Dysfunction issues yet, unless you consider an erection that is so bent it is almost worthless as an Erectile Dysfunction issue (and I do). I understand your frustration, lack of hope, desperation and thoughts of suicide. I think we all feel these things to varying degrees. Try to find something positive to concentrate on and hang on too. Whether it be a success story found right here on this forum or something in your life that you love to do. We can give up but then we will never know if we could have beaten this awful disease. Many here have found a way to greatly improve their condition and lead normal sexual lives. My condition seems to have recently worsened, but the hope on this forum keeps me coming back and looking for things I can do to improve my situation.

Best of luck to you brother. Please keep us posted on your decisions and progress!
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Hawk

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Re: First Post, Story, Questions, Recommendations
« Reply #4 on: November 17, 2013, 07:20:03 PM »

JNBArizona,

It is unlikely the ultrasound would have missed any calcification so that is a good sign that your condition has not progressed to that stage.  Dr. Tom Lue IS as good as it gets.  He is in San Francisco.  He is top notch and I have never heard a patient was was displeased with him.

Things will get better.  Focus on you business and distressing.  Also read the VED board and proceed slowly with the VED.

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

Mentos

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Re: First Post, Story, Questions, Recommendations
« Reply #5 on: November 18, 2013, 12:53:08 AM »

Sorry to hear the pain you are going through; I can certainly relate.


If I could add one aspect to your regime it would be visualuzations of blood flowing into your penis and you having rock hard erections - maybe even add some great sex in there two. The amazing thing about the body and mind is that if we do something, see something , or visualize something the same neuruscular system fires --people even develop muscle from just visualizing working out. If you have any questions pm me.

Good luck
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jnbarizona

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Re: First Post, Story, Questions, Recommendations
« Reply #6 on: December 07, 2013, 02:01:52 PM »

To those that replied to my post, thank you for your encouragement. I'm not giving up. I found a urologist in CA who is doing clinical trials with stem cells. I'm getting a proper MRI next week. The stem cell treatment is a week long thing, starting and ending with shock wave therapy.

I will post my experience and results on the forum in the appropriate place. Wish me luck.

JNB
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Mentos

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Re: First Post, Story, Questions, Recommendations
« Reply #7 on: December 07, 2013, 02:41:07 PM »

Hi JNB,

Good luck with your stem cell treatment!! If you can please PM me the location / Dr who is doing it with you in CA.

Again, wishing you fast healing and do keep us posted.
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arcadia68

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Re: First Post, Story, Questions, Recommendations
« Reply #8 on: December 16, 2013, 09:03:37 PM »

I am a newcomer with a recent diagnosis, but I have had a good experience with Dr. Gelbard in Burbank, CA. (If anyone has any experience with him, I'd like to hear about it.) He did an ultrasound after an injection of Edex and I could see the venous leakage myself. In addition, Dr. Gelbard is a proponent of Xiaflex (and a participant in the study, I think.) I am still deciding if that treatment is for me as I have more of an Erectile Dysfunction problem than Peyronies Disease, but perhaps that will help. I am seriously considering seeing Dr. Lue for a second opinion. Good luck. If you could PM me, as well about the stem cell treatment, I would appreciate it. Thanks and good luck.
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inkhorn

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Re: First Post, Story, Questions, Recommendations
« Reply #9 on: December 17, 2013, 07:19:21 AM »

Mentos- It is time to empty your pm box. Inkhorn
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Litani

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Re: First Post, Story, Questions, Recommendations
« Reply #10 on: December 17, 2013, 10:32:40 AM »

I go to Dr Gelbard too. He is very knowlegable about peyronies. He prescribed pentox right after my first exam.
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Care enough to throw everything you got at this disease but do not care enough to ruin your Life!

Mentos

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Re: First Post, Story, Questions, Recommendations
« Reply #11 on: December 17, 2013, 10:54:28 AM »

There is space in my inbox now ink horn
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