First post, lifelong condition

Previous topic - Next topic

0 Members and 1 Guest are viewing this topic.

foxmanus

Hello everyone,
Just want to introduce myself and compliment how nice the forum looks.  Here is my info:

1.) Almost 40 yrs old.

2.) Have had this condition ever since I can remember (about 30 deg to the left), just didn't know what to call it until I did some internet research in my 20's.

3.) Looking back, I would say I'm on my 2nd "acute" session with this, which involves pain with it in the full-on sate (first one was in my 20's).

4.)  This time has produced more bend (up to about 40 deg to the left now) definite hard spot(s) in the same area  and more pain unless very careful while in use (and sometimes when not in use).

5.)  Married since 2000, with two children.

6.)  Finally went to a urologist to get the official diagnosis, I really like him but as I feared couldn't tell me anything I didn't expect to hear (in a nutshell: sorry, wish I could help more but....... it is what it is).

7.)  Doc prescribed and I am now taking:  POTABA  1.0gm/day, NAPROXEN 1000mg/day, and OTC Vitamin E.

8.)  Have changed my diet to reduce inflammation (already dealing with abnormally early osteoarthritis).

Looking forward to reading and contributing to the forum, if anyone has any thoughts on my current prescriptions or would like me to post any more info to help, please let me know.

Thank you and hello again    

LWillisjr

foxmanus,

If you have had some curvature as long as you can remember.... maybe it is possible that you also originally had some congenital curvature??
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

foxmanus

Thanks for the reply LWillisjr,

Possible that has been the case (I can't rule it out), I have had one particular spot as far as I can remember that was unusual (lump/dent).  It has become the focal point of my problem during both of my episodes.  I have no idea if I might have injured myself early on in life (I remember a bike accident that was a real good candidate, who knows)  The whole thing has been a mystery to me, and I have tried hard to understand and deal with it on my own.  All the dating woes and the like I am seeing on the board here are way too familiar.  Scary not knowing what is going to happen this time.  Last time the pain and ED resolved itself with virtually no worsening, this time looks a bit more serious, I would guess because of my age?  Really cool to find people trying to help each other through a forum like this.  

skunkworks

Your best bet at this point is go and get the ultrasound to determine if there are plaques/fibrosis present.

If there are, then a whole host of treatments are available.

If not, it is probably congenital and I think only traction is an option, and I am not even all that sure about traction for a congenital curvature.
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

foxmanus

Thanks for the advice, I've got to go see the doc in three months for him to check progress with potaba/naproxin routine.  I'll ask about the ultrasound then.  

drelist

Hello Foxmanus

Deviation in the penis does not mean peyronies disease. There are different conditions which may cause a deviation in penis. So before starting any treatment, the disease should be proven by objective and subjective medical evaluations.

NeoV

In my opinion all dents and deviations must be treated as Peyronies, particularly if you notice changes. There are several reasons for this, the first being that Peyronie's is simply so deveatating that one should take action as soon as possible, and second, dents or bending that is even congenital puts a man at risk for developing the disease via trauma.

Moreover, the very few crossover diagnoses, vascular thrombosis and lymphatic swelling also benefit from CoQ10 and Pentox. I am referring to pentox's ability to clear mondor's disease which was shown in a study and CoQ10's effect on arterial problems in the Iranian study.

Of course this says very little, but it's the scarse reality we have before us. Crossover or differential diagnoses are rare or misunderstood.

Sadly the majority of members on this board had not had a clear cut diagnosis, only an ultrasound and diagnosis by hand. While always preferable, I don't find ultrasounds particularly useful unless your plaque is very palpable and easy to locate.

Correct me if I'm wrong but I believe it was Dr. Levine who commented on how most (young) guys have multiple soft scars which are hard to specifically locate. The disease is less "a single hard lump" and more of a degenerative disease, which also means treatment has to be multimodal and more "holistic" in a sense of treating it from all angles.

I love to quote this old study, that showed that 1/4th of all dead bodies observed had scarring on their penises. The argument can be made that scarring of the penis is a common wear and tear condition, worse in some.

While I hope more than anything that you do not have Peyronie's I would at least not delay treating it as serious as Peyronie's. Do see a specialist as soon as possible as Dr. Elist points to.

foxmanus

Thanks for the replies, unfortunately that was the diagnosis the urologist gave me,  feels like an area of little hard pieces of cartilage or scars in there on the bad side in one area.  Never been this bad before.  So far I feel confident in my physician though which I am thankful for, he's been doing his job for about 30 years.  He examined me and was confident in confirmed my fears.  I do also appreciate the advice from the experience on the board here as well (obviously why I am posting in the first place).  I'm pushing at least 45 deg now, all from that same wonderful spot.  I feel for anyone dealing with this.  Especially my wife.  I will proceed with all due diligence under pro supervision.  I should have had this looked at back when I had my first episode. Thanks again for the input guys.  I'll post progress reports to add whatever I can to the knowledge base here along the way.  

skunkworks

Ok then you should hit the other boards and sort out your treatment plan, as potaba, vitamin e and naproxin is not going to do you much good.

Read this thread - Peyronies Survival Guide - Information for New Members - Peyronies Society Forums

Read up on pentox (Trental/pentoxifylline), maybe even print out the studies and take them to your doctor.

Head over to the traction and VED forums and have a read. I did very well with a traction device, and so have others.
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]