Introduction - The Painful Journey

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bustedchubb

Age: 42

How long have you had symptoms?

My symptoms began in early November 2019.  

What are your symptoms?

The disease started out as having a strong ache / dull pain from the distal left side of my penile shaft about an inch below the glans.  The disease took a strong turn for the worse on December 13th, 2019.  Where I developed a dent at the location of the ache, and several strong flaccid aches and stinging pain that rotated between the right underside of my glans and the middle and upper left dorsal shaft.  In addition, I developed a thickening of the tissue that wrapped around the dented area from top to about 1/2 way down the dorsal shaft on the left side that appeared as a diagonal rectangle.  When erect, that material stretches over a large portion of my dorsal shaft and feels like someone wrapped my penis in a tight rubber sleeve.  Lastly, a dorsal vein on the right appeared to be thrombosed with bulges near the base and about an inch above.  Urination is uncomfortable and angulated at times to the left by 15-25 degrees.  

What treatments have you tried and what were the results?

Supplements: Vit E, Bilberry, L-Arg, Acetyl-L, Propolis, Alpha-Lipoic Acid, Pine Tree Bark, CoQ-10/Ubiquinol
Medication: Pentox 400mg 3x Day.  Ibuprophen 3 x 200mg per day Not at the same time though due to interactions.  After taking pentox for a period of 12 days, my inflammation and penile pain went up significantly so I had to stop Pentox for the time being until I get more into a stable phase.
Diet: Lower Carb (not Keto low, but ranging 80-100g carbs per day)  Very low to no sugars, though.  Natural slower burning carbs only.
Excersie: Nordic Track 3x per week but had to recently take a break due to it aggravating my main pain point on the dorsal shaft.
Manual Traction short periods per day as able.  
Light hypertherapy with Rice Sock and Heating Pad daily. - THIS IS THE MOST EFFECTIVE pain management yet when done correctly and avoiding glans or uretheral areas underneath.

Do you have insurance or means to get medical treatment?

Yes, and have seen urologist several times, first to be officially diagnosed (Happened January 23, 2020) and second time to find out the source of the urination issues.  My doctor did not believe based on several urine tests that my urethra sustained any injury, but believed to be a pelvic floor muscle issue due to the constant flaccid pain I am dealing with and hard flaccid.   Urologist suggested conservative oral treatment at the moment to see how the Peyronie's presents itself as it stabilizes. If urination issues persist or worsen, he suggested a pandescopy to examine the urethra to bladder to see whats going on.  I am going to wait for a while yet, as those scopes can flare things up even worse, and with the other issues,  I can wait. It's not "that" bad.

Where are you in dealing with the psychological aspects of Peyronies Disease?

It has been an emotional roller coaster. Sex is impossible due to the pain and tenderness.  I do have a slight angulation in addition to the hour glassing effect, but it remains around 5-10 degrees at most.  Urination is not as comfortable as it was and bothers me and flares up the hard flaccid almost every time  I go.  I do get very sad and at times, when things seem to go backwards instead of forwards in my recovery.  Anxiety varies from mildly disturbed to moderate levels and typically is tied to the pain and constant symptoms.  Unfortunately, I feel that I am in the minority of sufferers of this disease with having the chronic flaccid pain issues and not alot is talked about online about it.

Are you in a relationship?

Yes, Married, and my wife has been a bedrock to me working through the mental aspects of this horrific disease and the effects. It has brought us even closer together than before, and honestly I am not sure how I would have survived without her.
45 Yrs old, Peyronies Disease Onset 11/2019, Stabilized 6/2020.

Dent/Hourglassing distal and dorsal side, lost length and girth.

Underwent Plication with Dr. Brian Christine in Birmingham, AL on 6/17/2021. Fully recovered with no complications.

TonySa

Welcome, you've seem to have caught it early and will hopefully prevent any progression.  I'd consider adding low dose pde5i nightly, and VED or traction for additiobal treatment.  You may want to consider topical voltaren for pain as well.  Maybe restart pentox slowly...1/day and increase as you tolerate it.   You want to hit this w all you can...be sure to read/reread the survival guide here.  
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.

Pfract

Welcome... And please try to stay strong. It's also very nice to know your wife is supportive of your situation. Don't get distant from her....  

bustedchubb

Thank you both for the welcome and encouragement, it is appreciated.  I will be posting updates on the journey in the appropriate topic categories moving forward as well.
45 Yrs old, Peyronies Disease Onset 11/2019, Stabilized 6/2020.

Dent/Hourglassing distal and dorsal side, lost length and girth.

Underwent Plication with Dr. Brian Christine in Birmingham, AL on 6/17/2021. Fully recovered with no complications.

bob v

It's great to hear that your wife is so supportive. In my experience over the past year, my mate has been incredibly supportive, especially as I have expressed the truth of my feelings, what it means to me as a man, the loss of perceived 'closeness', etc. Be as open as you can about your feelings, and you might find that the journey actually makes you closer. Let's face it - it's not a journey that anyone wants, but you're on it, so you might as well use it to build your relationship.

Good luck.
Male, age 74, good shape, injured during active sex 1 year ago, pain + curvature + shortening. Bummer!