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Welcome to Dr. Landon Trost - Directly answering member questions in the "Medical Professionals" section below the Treatment boards. https://www.peyroniesforum.net/index.php/topic,16512.0.html

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Author Topic: Any Insight?  (Read 1248 times)

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hopefulfarmer

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Any Insight?
« on: December 08, 2018, 11:11:38 AM »

My experience with peyronies started about 3 years ago with an hour glassing and indentation on one side.  Very painful night time erections and painful sex.  I saw a peyronies specialist Urologist about 6-8 months after first symptoms.  He prescribed Pentox and told me to wait out the acute stage.  From studying this board I tried every supplement, traction and VED.  My body could not handle the pentox, burned right through my stomach.  I felt I had some success following the protocol for VED.  However, I believe the VED created a massive hardening of the base of my penis, which lead to a restriction in blood flow.  I was able to stabilize and learn to have a sex life again. (I am married and with the same woman for 35 years now, she is very understanding)  Here is my current status.  We suffered a great tragedy about 10 months ago.  I have been going through tremendous stress and complex grief.  During this time my peyronies activated again and has run rampant.  The penis is filled with massive hardened lumps around the base, severe hour glassing, and indentations.  Erections are very painful, and sex has become impossible.  (My wife needs the intimacy right now to help with the grief)  Does it make sense that stress can reactivate the progression of this disease?  Has anyone reached the point where the penis is so disfigured that sex becomes impossible?  My urologist said surgery was the only option he could offer.  I don't think there is anything left to work on with this current condition.  I am at the point of giving up on it.  It adds to the the grief.  Can anyone of you offer something that you think I could do?  (just to let you know what the grief is...our beautiful son took his life in Feb.  He was weeks from graduation from college.  He graduated from the Marine Corp Officer School and was going to commission into the Marine Corp as 2nd Lt. after college)  I added that so you don't have to try to guess what our stress is.  Life is very screwed up for us right now, and peyronies is adding to the stressors.  Thank you in advance for any consideration or advice you could offer.
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TonySa

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Re: Any Insight?
« Reply #1 on: December 08, 2018, 04:36:48 PM »

I’m so sorry for your loss, it’s going to make any decisions you need to make even more difficult.  Do you have a peyronies specialist that you trust? 
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PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

hopefulfarmer

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Re: Any Insight?
« Reply #2 on: December 08, 2018, 05:38:12 PM »

I don’t have a specialist I can trust. The urologist that I went to is on Dr Lavine’s recommended list.  He did not give me any confidence that surgery can offer relief.  Thank you. 
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Bubba dawg

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Re: Any Insight?
« Reply #3 on: December 08, 2018, 05:59:12 PM »

Sorry for your loss. That must be a terrible ordeal. I would suggest long term grief counseling for you and your wife. Stress can cause all kinds of health problems.
The internet can be a dangerous place. I would not try drastic things like ved or traction without a doctors supervision. The penis is not something to be experimented on. Find an experienced peyronies doctor.
A lot of people go to grief counseling. Learn to live with this tragedy. Get that stress under control
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5 Rounds of Xiaflex. Good results.

I am known to give out false information and post nonsense with little to no evidence to back up my claims.
I have ignored several warnings. Further reports to the moderators or Administrators and I will be banned.

Hawk

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Re: Any Insight?
« Reply #4 on: December 08, 2018, 06:35:32 PM »

Hopeful, I can understand your stress.  I was touched and stressed just reading it.  After 15 years here I am convinced stress does trigger Peyronies Disease flare-ups.  Just scores of men have it hit them immediately after divorce or other loss.  Caring for yourself emotionally is crucial as Bubba Dawg said.  I do differ with him on the VED.  The facts are clear.  The VED and Traction were tried and tested by patients for a decade with doctors swearing they were worthless.  Only after hundreds of patient accounts did they bother to even look at them along with a few doing some small studies.  Had we waited on doctors we would still be taking vitamin E and Colchicine (both worthless in my opinion).

I would try to find a sexual health doctor or at least a urologist interested in Peyronies Disease.  Your doctor must be half decent if he prescribed Pentox.  It is unfortunate that you could not tolerate it. 

What is your Erectile Dysfunction situation?  It seemed the Erectile Dysfunction prevents intercourse but I was not sure it was not pain or curve.

Remember, that intimacy does not require a fully functional penis.  It is only one facet of intimacy.  men often withdraw from what they can do if they can't have intercourse.  You can still have great sex and you can, of course, give your wife the hugs, kisses, and close reassurance that mean so much.

Please stay in touch, and know that our hearts go out to you and your dear wife. 

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

hopefulfarmer

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Re: Any Insight?
« Reply #5 on: December 08, 2018, 08:26:20 PM »

Hawk, Thank you for the message.  The Erectile Dysfunction I am experiencing is a grouping of very hard knots in the base.  These large knots restrict blood flow to the outer 2/3 of the shaft.  Large indented area on the outer 2/3 length.  Can’t maintain during erection, plus severe pain.   All of this combined creates a massive psychological distraction.  The knots feel like very hard tumors.  I think its time to return to professional help.  I need to find the right provider.  Thank you as well Bubba, I will begin searching for help. 
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Bubba dawg

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Re: Any Insight?
« Reply #6 on: December 08, 2018, 09:15:03 PM »

I wasnt implying ved or traction weren't good treatments.  Just may not be the right treatment for his particular problem. Doctor won't recommend treatments before they do an in person examination. How can we do that? That's why I said the internet can be dangerous. May do more harm than good if your problem doesnt match the treatment. Looks like there are different types of peyronies. Different stages. I have no lumps or dents or abnormal shapes. No Erectile Dysfunction. So one size does not fit all.
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5 Rounds of Xiaflex. Good results.

I am known to give out false information and post nonsense with little to no evidence to back up my claims.
I have ignored several warnings. Further reports to the moderators or Administrators and I will be banned.

Hawk

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Re: Any Insight?
« Reply #7 on: December 08, 2018, 09:34:37 PM »

Bubba, I don’t want to steal hopeful’s topic but my only point is that few doctors even acknowledge their benefit PERIOD.  A dozen years ago they would all have told him to not use them.  I do not consider one urologist in 500 to have a clue when traction or VED will or won’t help.  There are no real randomized clinical studies that tell us when they will and won’t work.  Doctors are guessing on that topic just like us, and we guessed they had value long before any doctors.  That is documented history.
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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

Pfract

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Re: Any Insight?
« Reply #8 on: December 09, 2018, 03:43:12 AM »

@hopefulfarmer: it is such a difficult situation you are going through right now. Please reach out of counseling in the future... as for your situation, i could not second Hawk's post more. There is much more to intimacy than sex, and the worst thing you can do is start to become distant from your partner due to this disease.

Here is what the canadian urological association recommends Dr's follow, but it gives an idea on what to do: (please view the picture in the post attached
below:

Appears that surgery is in my future - Peyronies Society Forums

Bubba dawg

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Re: Any Insight?
« Reply #9 on: December 09, 2018, 03:58:46 AM »

Ya Hawk, my doctor has 3 or more medical degrees(they are listed on the internet). He just had me on xiaflex and molding exercises. I should have brought up ved and traction. I will if I go through another round. Seem like they would be more effective than bending and release
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5 Rounds of Xiaflex. Good results.

I am known to give out false information and post nonsense with little to no evidence to back up my claims.
I have ignored several warnings. Further reports to the moderators or Administrators and I will be banned.
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