New member, diagnosed 2 years ago

[pointedly]

Hi All,

I am 52 years old and live in Minnesota.  Like everyone here, I have many uncertainties about my battle with Peyronies.  The first thing I noticed was a dent about halfway up on the left side.  I did a search for possible causes and Peyronies reared its ugly head.

I called my brother (4 years older) who had announced to our family in the early '90's that he had "tumors" in his swimsuit area.  (He has always been prone to exaggeration, so when he told us they were non-malignant, we figured it was something other than a cancerous growth.)  When I talked to him after my discovery and initial research, he confirmed to me that he had Peyronies (not tumors).  I've talked to him during the course of my treatment about his condition and he says that his penis is mostly normal, but "interesting".

I went to my regular doc, he diagnosed me and sent me to a physician's assistant who specializes in Peyronies.  I was immediately put on Pentox and scheduled for ultrasound treatments.  The condition worsened during the ultrasound and the plaque/lump became more pronounced.  He suggested a traction device and things became worse along with frequent pain.

Long story short, I am still on Pentox, have had two rounds of 12 Verapmil and during the second round I developed severe pain on the end of my foreskin (I'm not circumsized) on the top side.  The pain is worse when the foreskin is pulled back (flaccid or erect).  The PA felt some plaque just adjacent to the glans and split the Verapmil between there and the main plaque.  On my second to last visit, interestingly, the skin split just under the foreskin and the PA attributed that to the volume of the injection.

I stopped the traction because it caused pain (even mild stretching) and I wondered if it was possible that the device had caused the secondary plaque where the loop of the device was pulling?  Just coincidence?

My PA has also mentioned that there has been some talk about using kidney stone surgical processes to disintegrate the plaques.  The downside, he says, is the amount of heat (hyperthermia) that is generated.  Anyone else heard of this?

I am seeing him next week to likely start another round of Verapmil.  Any advice from anyone about questions I should ask?  He has never used a visual-purposed ultrasound or other medical device to determine the exact size of the mass, multiple locations, etc..,.  I'm gathering from reading other posts that he should do this?

I also am a very avid weight lifter/workout fiend, so I take about 10g of arginine (in different forms) and 3g of liquid l-carnitine per day.

Thanks for taking the time to read my post and any feedback would be appreciated.

Pointedly

[james1947]

pointedly

Welcome to the forum.
I am proposing you to read the forum posts regarding Verapamil injections before your next visit to the doctor.
You have done already two rounds of 12 VI with no help as I understand.
You may want to read also:
HYPERTHERMIA - Infrared light and Heating therapy - Peyronies Society Forums
You may insist also to have an ultrasound examination to you plaques for better understanding you situation.

James

[BentYoung]

Pointedly -

This is yet more evidence that genetics have a huge role in all this. I had a similar conversation with my father who told me he had Peyronies Disease as well. Ugh...  

[fubar]

Pointedly

Could you come and keep the family out?  We as a forum would love to read your post. If you would like to leave history there is a board for it.

I understand your stress and concern and want your concerns properly addressed.

Fubar

[pointedly]

Fubar,

I appreciate your input as I am new here.  Since I have heard that there may be some genetic link to Peyronies, I thought it germain to mention that a family member also had/has the disease.  Again, since I am new here, I noticed that there was a "Violator Warning" attached to your post.  Does this mean that I have received a warning for my post by mentioning my family member, or is that related to your post?

Thanks,
Pointedly

[finarod]

Your post does not violate any of the forum rules. It's Fubar who is watched, not you.  

[james1947]

Pointedly

No, as Finarod wrote you didn't violate any forum rules.

Furthermore, the subject of genetic connection was and it is discussed on the forum. Myself has posted that my father got Peyronies at the age of 61 and myself exactly at the same age. I know that from my mother, years after he passed away at the age of 68, my mother thinking that his depression caused by the Peyronies was a very big factor in his early passing away.

James

[pointedly]

James,

Thank you for the note and I'm sorry for your loss.  I certainly understand the feelings of depression, as I have some feelings of hopelessness at times, although at this stage I am still mostly hopeful.  This forum has helped me immensely in knowing that I'm not alone and that I will always have someone to "talk" to if I need...

I always try to maintain a perspective that goes along the lines of, "I complained about having no shoes until I saw a man with no feet."  I am lucky to have an understanding wife and we are very open in discussing the disease, its progression and we try our best to work through it.  I have two teenage boys and since there appears to be some genetic link, I have already discussed my affliction with the older one and have talked to him about how injury/rough sex can be a cause, and have told him about looking for any dents, bends, lumps, etc..,.

Pointedly