Introducing myself - Anon

[anonpdacct]

Hi everyone,

I've been on the forum for a while and communicated with several members individually.  A broader introduction is overdue, so here I am.

I'm 41.  Diagnosed with Peyronie's in March 2013 (approaching the one year mark).

I'm currently taking:  Pentoxifylline, Colchicine, L-Citrulline, CoQ10/Ubiquinol and Vitamin D.  

Doctors I'm seeing:  Dr. Gelbard in Burbank as well as Dr. Lue in SF.  They've both performed ultrasounds.

Here's my background:  

Noticed curvature in March of 2013.  At that point there was no pain.  I immediately saw a urologist at Cedars and he said, "This is Peyronies, but probably not new and likely won't progress. Do nothing."  

One month later I saw a 2nd urologist at UCLA who said, "This is definitely new."  He prescribed Pentox, L-Citrulline and Cialis.  Unfortunately, I opted against taking Cialis because I was born deaf in my right ear.  I realize the probability of hearing loss is low, but I can't take chances with Cialis and my one good ear. This decision was very difficult for me.

The first 4 months my condition appeared stable from observing my day-time erections.  As time progressed, I noticed increased narrowing and shape-shifting, as well as more pain during night-time erections.  I suspect there's been length loss, which has continued.  It's now almost a year later, and I still often have pain with night-time erections.

At the 5th month or so, I saw both Dr. Lue and Dr. Gelbard.  They both performed ultrasounds.  A couple months later they started me on Colchicine which I've now been taking for 3 months.

Two months ago I started VED protocol. I asked a lot of questions of members on this forum before starting. I was extremely careful. I bought a high-quality medical grade device.  I even scheduled appointments with Dr. Gelbard to show him exactly how I'm using the VED. For two months I was doing the routine diligently and no issues. I never pumped to the point of pain, just fullness. "Less is more," I told myself everyday.  But one week ago I hurt myself by bruising the glans.  There was no pain or anything unusual.  I just woke up and saw it was inflamed.  It is still bruised today and still looks inflamed.  I'm definitely worried about it, and I'm even more worried that I may have damaged internal tissues that I can't see.  I'll post my VED questions elsewhere if that's more appropriate - either way if members can reassure me regarding the likelihood of increased internal scarring from the VED, or potential loss of smooth muscle elasticity, it would be much appreciated.

Going forward, I don't know what else to do other than continue my meds and supplements. I have ultrasounds scheduled later this month.  I'm considering flying to Chicago to see Dr. Levine to discuss traction.

Psychologically, I'm not well. I struggle mightily with depression. Motivation for the other facets of my life is difficult to muster.  I go through the motions at work to keep myself distracted as best I can.

Relationship status: I'm single. Approaching women seems way outside my comfort zone now that I have this condition.

That's my story. I welcome all questions and any correspondence whatsoever.

Sincerely,

Anon

[emasculated]

You are doing your best that's currently available (which isn't much). More can't be expected. My advice is to not spend too much money on travels etc.. I did that for a long time and just came to realize, it's not helping in any way. The Peyronies Disease specialists I've been to are just not doing anything much and it rarely pays off to spend that much money. I rather keep the money and do something really nice for myself. I limit myself now to one guy I go to every 3 months for continual assessment and that's it. It's good to put this out of your mind, _force_ yourself if you have to, not to think about this for a whole day.. then the next day etc. If you don't have any pain at rest.. count yourself happy about that. That makes it easier to think of other things and follow other interests. I can totally relate to the depression part and that's my way of dealing with that. Not always doing a good job, but trying nonetheless. I also noticed that I have zero time and understanding these days for people suffering from idopathic "depression, anxiety, phobias" and all this crap that's just in their heads. They just don't know what they have in life and I'm tired of these crybabies. If you have a real reason to be depressed like this horrible affliction we all share.. I guess it's just annoying to see people with luxury problems. ;-)
Try to talk about the condition to people, the 99.9999% who are _not_ afflicted by Peyronies if you can. It's also an eye-opener (not necessarily a positive one).

[james1947]

anonpdacct

I am not sure you have to see also Dr. Levine as you have already two leading Peyronies doctors, but if you can afford it, fine.
I was adding VED or/and traction to your treatment.

James

[Skjaldborg]

anonpdacct,

First off, sorry you have Peyronie's but welcome to the forum. I wouldn't worry about bruising on the glans from VED. The glans is very soft tissue and is more easily bruised than the tissues affected by Peyronie's. Also,  the glans is anatomically separate from the erectile chambers. While the glans does increase in size during an erection, it is not connected to the corpus cavernosa (the primary erectile chambers). I believe the glans bruise will heal on its own and should not cause you extra problems.

Pentox worked well for me, but keep in mind it takes a long time for it to work. It resolved my pain relatively quickly (a few weeks) but it took over 6 months to see physical improvement. I stopped taking pentox at Dr. Lue's direction after 8 months total, which was 4 years ago. I am still seeing minor improvements as time goes by. I'm not cured, but a reasonable amount of healing is possible.

My advice: push yourself to exercise and force yourself to focus on your hobbies. You have to distract yourself and give yourself time to heal. Get yourself in the best shape possible, eat lots of fruits and veggies and do both cardio and strength training.

As for dating, honestly, a good woman is not going to care what your penis looks like. Women have hundreds of things that they are body conscious about. Just be honest and go slow. I am facing a divorce right now so I know the prospect of meeting someone new is scary. Don't rush it. Join clubs and meet people. It'll happen. PM me if you have any questions.

Good luck,

Skjald

[anonpdacct]

Skjald, James & emasculated,

I really appreciate these answer from you guys.  it means a lot to me.

Skjald - your answers regarding VED and injury are incredibly reassuring.  I have a pre-scheduled ultrasound next week so we'll see what's what regarding the imaging.  I'll let everyone know what transpired.

best,

Anon