Newly diagnosed and needing advice

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Theotherguy

Hello all,
First, I want to express my gratitude for this community and the resource it provides. I've been lurking here since my recent diagnosis. Thank you. I will try to keep this brief and concise but I apologize in advance for the excessive words that seem necessary.
I'm about to turn 41 and until a recent (2 months ago) automobile accident I've always been a very fit and active guy. About three weeks ago I noticed the physical changes that led to my first diagnosis by me on the Internet (stupid I know), followed by pcp's tentative diagnosis the next day, then regular urologist's tentative diagnosis a week later, and finally a more definitive diagnosis of Peyronie's disease by a Peyronie's disease specialist. As a side note, I felt extremely fortunate to be offered an appointment at the clinic the next morning following my call. This last appointment was near the end of last week. He prescribed medications and talked a bit about the disease process and prognosis.

The symptoms I am currently experiencing are;

Palpable and visible plaque near the base on the shaft (focal point of pain) and along the top and sides. It seems to be changing at an alarming rate.

Disappearance of slight congenital upward curve although the angle up from my torso has increased, replaced by a curve to the left that is slight (10 degrees?) when erect penis is viewed by itself. If viewed in relation to my torso however the glans is way out in left field and twisted. The curve almost seems to start in my body.

Slight hour-glassing at about the mid point.  

Reduction in girth past mid point and a
reduction in length both flaccid and erect

Difficulty in attaining and maintaining erections

Penis pain; worst when flaccid and sitting, eased by standing. Still present when erect but less intense and different feeling. Its a pulling, burning ache that varies in intensity from almost non-existent (rarely) uncomfortable, annoying and mildly painful (usually) excruciating (rarely). I had a major pain flare up after the last urological visit that I think was set off by the deep palpations (first student, then doctor). I had noticed previously that even gentle palpation results in increased pain afterwards.

Loss of sensitivity. This is most pronounced along the top and end. The glans i can feel but it's about as sensitive as my elbow.

The pain and loss of sensitivity along with the erection difficulty are the most immediately troublesome physical symptoms although my fear of the other symptoms worsening is the part of this I'm struggling with the most emotionally and psychologically.

I wasn't sexually active in the months leading up to my diagnosis but I had been dating a woman that I was serious about and it was our first time together that made me take a closer look at myself. I hadn't been paying too much attention to that part of myself because I've been recovering from a neck injury that resulted from a motor vehicle accident two months ago. I had asked my pcp's physicians assistant about penis discomfort a couple of weeks before my diagnosis but he examined me and assured me that it was residual irritation from jock itch I had over the summer. He suggested some gold bond powder. I accepted this although the jock itch was in the crease between my testicles and thighs and the discomfort was in my penis. I was in for a neck related visit and this was just an aside.
At about the same time as the penis pain started I also started to feel discomfort and numbness and a pulling sensation along with radiating pain in both soles of my feet and both palms of my hands. These areas were all traumatized in the accident when a driver in oncoming traffic swerved into my lane and hit me head on, totaling both full size pickups. My seat belt kept me from going through the windshield, both hands where on the wheel and both feet were on the brake.
The injuries sustained in the accident have kept me out of work for the last two months. An insurance snafu has kept me from receiving any  compensation for more than a month now. I may need to prioritize and get medication as finances allow.
I just picked up:
Pentoxifylline er 400MG 3x daily
Colcrys 0.6 MG 1x daily, increase to 2x if tolerated.
I have a prescription for Cialis but have used the 4 I got and and will have to wait to refill.

What is the most important medicine, vitamin or supplements to begin with?

The pain flare up after the physical exam makes me think that I should wait to do any mechanical treatments until the pain subsides.

How much of a disadvantage is a delay in treatment of a few days or weeks?

The relationship I had begun has now ended. All of this was just way too much strain on a new relationship.

The psychological and emotional impact of this diagnosis has been devastating to say the least. Staring down the barrel of an autumn and winter where the primary form of entertainment is watching my penis deform is not appealing. I admit that I initially wished it had been a diagnosis of something that would kill me. I can't imagine taking my own life but the prospect of bearing witness to these changes and living with a deformed or non functioning penis coupled with the neck, hands and feet symptoms has lopped the head off my will to live. I'm trying to stay positive. It isn't just the compromised sex life that concerns me it is also how this will affect the quality of the rest of my life. I can't imagine starting to date while the changes are ongoing. I dread the thought of beginning an intimate relationship in the future with my sexuality compromised. Some time has given me some perspective but it is still eating me alive.
Any and all advice from guys who have travelled this road would be greatly appreciated.

jackp

Guy

I feel your pain. I was hit while walking in a parking lot almost 2 years ago, by a guy talking on a cell phone. You need a good attorney for both the workers comp and the liability of the guy that hit you, stay away from the attorneys that advertise on TV.  Also your uninsured motorist policy should help.  

Even with the pain, which may be related to the accident, you need to start on the single cylinder VED therapy ASAP.  It is the only thing that will help with loss of penile size. Send Old Man or myself a PM and we can tell you where to get a VED that a reasonable cost. By the way Old Man is the pro when it comes to the VED and the VED therapy.  

Go to Cialis.com for a coupon for a free months supply of daily Cialis. Take it along with the prescription to the drug store. I would suggest the 5mg daily.  

Also in regard to pain. You need to rule out damage to the nerves in your back. If you are going to a neurosurgeon or orthopedic surgeon see if a nerve test is in order. Also you may need to see a pain specialist.  I have been through this and more for the last couple of years. It will get better.

Any questions I will be happy to help. There is a lot of information on this forum. Welcome to the forum.

Jackp
http://jackp-penileimplant.blogspot.com


MattFoley

What is the most important medicine, vitamin or supplements to begin with?

You're on it: Pentox. My doctor has me on it 3 times a day, 800 mg, for a total of 2,400 mg daily.

This forum is a reservoir of vast amounts of information on Peyronie's so your healing begins here. I know it can seem a bit overwhelming but take your time, ask a lot of questions, and follow through on your treatment.

As Jackp mentioned, Cialis will definitely help. You can also add things like L-Arginine to help with blood flow.

As for your concern regarding mechanical treatment, i.e. VED or traction, I would certainly speak with a Peyronie's urologist about when to start using it since you are currently in pain and even minor touching of your penis causes pain. The last thing you want to do is aggravate the situation. Of course, never do anything that causes more pain. If the doctor doesn't know, you can certainly try it and proceed carefully. I would follow the advice of Old Man on which VED and protocol to follow.

Again, ask as many questions as you need. We're all here to help each other.
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