Wish I knew about this forum years ago. My story/a couple questions.

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unfortunateanon

Hello all, first of all I appreciate this forum, and I wish I knew about it when I first developed my peyronie's symptoms, let alone the progression that I currently deal with. I will list everything I have dealt with as best as I can remember.

First onset of peyronie's symptoms occurred after a penile fx that occurred during sex approximately five-six years ago. These symptoms included difficulty maintaining an erection, pain with erections, and the development of a very slight curve. The first urologist I saw informed me I should not worry and that it was symptoms of a penile fracture, and that I should "continue to masturbate and have sex in order to reestablish strength of my erections" and that I had nothing to worry about as I would surely soon be "happy and healthy". Nothing could have been further from the truth, as since then I feel as though I have been living a worsening nightmare than I cannot wake up from.

I saw a second urologist approximately two years later and he diagnosed me with peyronie's. I went to see him because I never regained full strength of my erections, curvature began to worsen, and I could not maintain an erection if I was not on my back. The doctor said "I have never heard of that, that doesn't make sense to me", which should have been my first red flag given the fact that it took me all of 2 minutes after my appointment to find a men's health article that clearly stated "some men with peyronie's cannot maintain erections in certain positions" (I am paraphrasing there but that is essentially what was written). However, being young and knowing nothing about the disease I trusted him, like I did the previous urologist, and the two after him. That urologist referred me to another urologist (3rd urologist) at the practice who gave me an ultrasound while erect. He said, "just leave it alone, I'll prescribe you some cialis but messing with it will make it worse as your plague is located near your urethra, but you're pretty rigid". Mind you I required two doses to get erect for the ultrasound.

Another two years passed and again I decided I would try to see another urologist after trying to have sex in position that was not on my back, and being unsuccessful at maintaining an erection with cialis. This doctor prescribed me viagra and cialis and told me "it was all in my head" and that I eventually wouldn't need the meds. I was mortified. He never even asked about the results of my ultrasound after I told him I had one. He was also clearly wrong, the issue is not in my head, it is in my dick. While on both the cialis and viagra, I still could not maintain an erection in any position other than laying on my back.

During this entire time span, I had sex with several women but they were all essentially one night stands so I wouldn't have to explain why I only could have sex on my back. Every time it was slightly painful. A few months ago during one of these one night stands I aggravated my peyronie's to the point I felt a sharp pain, and the pain lingered. For lack of better words, it feels as though I have re entered the active phase. Since the aggravation my erectile dysfunction has increased severely. I have pain in my penis at all times now, not only with erections. My penis has severely narrowed on the underside/right side, and I have lost what appears to be half an inch to an inch of length (maybe more, I have not measured or been measuring as I was never advised to). I also have clearly palpable scarring on the underside of my penis, and it appears as though it has discolored to be red/inflamed. I tried being intimate with one woman since, but I was essentially mocked to my face and asked "what's wrong with you?" as I am now visibly deformed. I cannot even bear the thought of trying to be intimate with another woman since that interaction.

Though I am filled with a little bit of optimism since I found this forum, I am currently constantly depressed. Nothing brings me joy. I fear the functionality, girth, and length I lost will be gone forever, and I will never have the opportunity to live a "normal" life. I fully appreciate that many people in the world have it worse than I do, but I cannot shake this depression. I don't know if this makes me weak, but I can't escape this feeling.


My question for anyone kind enough to read this and offer me their time is what would you do in my shoes? I am extremely turned off at the mortifying routine of going to a urologist to have them poke and prod my dick and end up not helping/doubting me. I have only ever been given meds for Erectile Dysfunction as treatment, and not only did it not help my Erectile Dysfunction, it did nothing to stop this disease from progressing. If you do recommend I try a fifth urologist, does anyone have any suggestions regarding good Peyronie's specialists in the New York area? Though I am all but certain I will never get anything close to my old penis back, I just want a shot at a love life that isn't completely hopeless/traumatic due to dysfunction and deformity and freedom from this constant depression.
Age: 27
Date Peyronies Disease started: 2016
Symptoms: Severe ED, Severe Narrowing with urethral involvement, significant loss of length and girth
Degree of bend: Unsure
treatments tried: Tadalafil/Sildenafil
Relationship status: Single

Benraycamp0

Welcome to the forum! Thanks for filling out your signature line.

Please read through our Survival Guide if you haven't already! -  https://www.peyroniesforum.net/index.php?topic=3180.0

I think you definitely should get to a Peyronie's specialist, someone who really knows what they are doing. Dr. Eid is a top Peyronie's specialist in NYC - https://www.urologicalcare.com/. You might also consider Dr. Levine in Chicago, one of the best in the world. You need to go through your entire story with them, give them all the details, and get their opinion on your case. Prepare a solid list of questions to go through with them.

At this point, since this has been going on for 6 years and includes a penile fracture+subsequent injuries, there really is nothing to do except to get to a top Peyronie's specialist. That is the best and only next step.
26 years old. 20 degree upward curve with slight clockwise twist. Symptoms onset Dec 20.
Dr. Levine says it's not Peyronie's Disease but a slow healing wound. Saw him Mar 21 and May 21.
Traction (PMP) and supplements per Dr. Levine's recommendation.

GaussRifle

First off I want to tell you that I have complete empathy towards you and that you are not alone. As a young guy who has always been unable to have sex, I truly understand how you feel. Moreover, it is important you start doing traction as it seems you dont do it. You need to have an action plan in your mind. Your first step is to find a great peyronies specialists ("Not your average urologist"). They need to do a Doppler test to establish ED, if it also exists like you claim , then I think the only next step is to discuss Implants as a possible option.
26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

Hawk

Welcome to the forum Anon.  I pretty much agree with the previous posts.  There is no point wasting time with another general run-of-the-mill urologist.

Can you tell us the state or the region of the country you live in?

Do you have insurance that is widely accepted?

If you indeed have Erectile Dysfunction that is not based on your depression and performance anxiety, AND penile deformity, you are a candidate for an implant even though you are young.  The first thing to do is make certain that the stress hormone adrenalin, which physically blocks erections, is not a significant factor.

Take a deep breath, relax.  You have a lot to cover, lots of questions to answer, some reading, and research to do, but you are going to get through this. We will point you toward the resources you need as you answer questions.

We are anxious to hear back from you.

Hawk
Founder/Administrator
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

Mikel7

Welcome to the forum Anon!  All of the advice given has been time tested and you should listen and not despair.  I want you to eliminate out of your vocabulary the word never!  It is such a downer word and doesn't help your mental state!  Your mnd will play tricks on you id you let it.  Yes you are experiencing some very real penis problems - all of us here have too.  We all have regrets of things done and not done. You can't unscramble eggs but you can choose to start anew.

I definitely agree that you need to be assessed by a peyronies specialist. Hawk suggested Dr Reid and I concur with him because you are in New York.  Read the suruval guide and learn more about peyronies and it's different treatments.  You are among a great bunch of guys who care and are willing to share our experiences with you.   Also search the forum because it contains a lot of wisdom. You will come through this!  Get out of your negative thinking! If you need meds/counseling for depression then get some - but remeber that never is such a final word.  :) Mikel7
Lump 4/2020, age 62 , Dr Levine 6-26-20, Dors Curve 11/2020, Peyronies
Vit E400mg, COQ10, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
SNHL 7/2020 - Stopped all Meds because ototoxicity  Heat/traction/VED are working. CPPS Diagnosis - Stable :)

unfortunateanon

I live in NY

I have united healthcare community plan, I am not sure how widely accepted it is as I am new to the plan.

My depression and performance anxiety really set in during the past half year after I had a partner that mocked my deformity and inability to maintain an erection. Though I was not thrilled to only have sex on my back, the fact I only engaged in one night stands allowed me to push aside emotional investment/embarrassment. It was not until my deformity was brought directly to my face by that individual partner that I began to truly have performance anxiety. However, since my dysfunction was increasing noticeably after the sharp pain felt during sex I believe the worsening Erectile Dysfunction is associated with the secondary injury, as is the progressing deformity. Since it appears the deformity is contributing greatly to my Erectile Dysfunction, I fear I will not be a candidate.
Age: 27
Date Peyronies Disease started: 2016
Symptoms: Severe ED, Severe Narrowing with urethral involvement, significant loss of length and girth
Degree of bend: Unsure
treatments tried: Tadalafil/Sildenafil
Relationship status: Single

Mikel7

I have United healthcare insurance and I'm prety sure Dr Reid is a provider on your list. You need to call the office. You should not assume that you are not a candidate  for anything just yet. Get an appointment and get in.  Make up a list of questions and concerns you would like to ask the Dr. If it is all possible take someone with you as 2 heads are better than one at listening and asking questions. The fact that you are doing something proactive now is good. Just follow through with it.  
Lump 4/2020, age 62 , Dr Levine 6-26-20, Dors Curve 11/2020, Peyronies
Vit E400mg, COQ10, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
SNHL 7/2020 - Stopped all Meds because ototoxicity  Heat/traction/VED are working. CPPS Diagnosis - Stable :)

Hawk

Anon,  Thanks for responding.  About your PM about the correct way to respond.  You did exactly as you should have.  The quote button is only needed if you are referring back to a post several posts down.  Even then, we ask that members trim the quote and not quote entire posts.

If you are in NY state, you are very close to arguably the best implant surgeon in the world.  He is the best not only in experience and skill level but is the most accessible doctor you will likely meet in your lifetime.  Men travel to him from all over the world. He never hands you off to a PA, and if you become a surgical patient, he will give you his cell phone number with access to him 7 days a week if necessary. He truly delights in his craft and in helping men.  If he does not think he can help you he won't operate. He has done about 7,000 implants and is located in Manhattan.  You will find his staff as accommodating as he is. Here is his contact info. ---> https://www.urologicalcare.com/

Because of your young age and because implants last for an average of about 12 years and require a revision, you should not rush into such a solution.  You should first try the supplements mentioned in the survival guide that you were advised to read along with traction and a VED.  If these do not help, they will Preserve your size and possibly reclaim some of the size you lost before you get an implant.  This means a larger implant.  

He has implanted men younger than you on occasion and has implanted some men who had a greater than 90-degree bend.  Here is one example ---> https://www.peyroniesforum.net/index.php?topic=11204.new  The residual curve will improve with cycling the implant.

Here is a cross-section of some implant journals.  Scan over them, then take some time to read one or more in detail.  There are several more:
The biggest similarity is that every one of us wishes we had opted for the implant surgery even sooner.
Anon's Implant Journal - 34 yrs old, 50-degree curve, no Erectile Dysfunction Titan, Dr Haaky, Atlanta
Cold Brews Implant Journal - 22cm Titan, Dr. Lentz, Duke University
Hawk's Implant Journal - Live Now in Penile Implant Surgery - Titan, Dr Eid, awake during surgery
Hereiam Implant Journal- 28 yrs old, Titan, Dr. Eid
Merrix's Implant Journal - The Ultimate Complete Word on Implant Journals- A Must Read - 42 yrs old,Titan, Dr Eid
P-Diddy - Another Implant Journey- Titan, Dr. Eid Experience with several women where the implant was both revealed and kept secret.
Roddy's Implant Journal - From 90 Degree bend to straight - Deformity only, no erectile Dysfunction, Titan, Dr. Mike Fraser - Glasgow
Stepone's Implant Journal - Titan, Dr. Lentz, Duke University
SteveW's Implant Journal, Gay man - 20 Years of Peyronies - AMS with RTE's, Dr. Etai Goldberg, Saint Louis, MO
SW01 Implant Journal - Titan, Dr. Campbell, Cincinnati
TDix's Implant Journal - 46 yrs old,Titan, Dr Faysal Yafi, Orange, CA,
Xehonart's Implant Journal - 30yrs Old, Single, Titan, Dr. Eid
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

Hawk

A "run-of-the-mill urologist" is not someone you would ever allow to do surgery on your penis.  Short of surgery, this what they can offer for Peyronies Disease and ED

Pentox, which, at least according to Dr. Trost, has questionable benefit
Daily Cialis or a similar PDE5 Inhibitor
Maybe some Xiaflex injection, but I think I would pass on those.
You might talk them into some 50 MG Trazadone tablets to take 1/2 a tablet at night.  It is dirt cheap, helps with sleep, and causes NTE's as a side-effect.

The significant things at your disposal can be done without a urologist
1. Traction
2. VED
2. Diet and supplements
4. Heat therapy
5. Meditation to deal with stress, anxiety, depression

If these things improve your ED to a reasonable point, they are well worth it.  If not, then you need an implant.  You can only get an implant from a doctor who does over 100 per year and has several other qualifications that we will get more into when/if that time comes.
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

LWillisjr

This introductory topic is reaching the limit of 10 posts as an introductory topic. So will lock it now and feel free to start new topics in other areas of the forum
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
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