Hello from New Mexico.

[Jeepman47]

Hello,

I'm new to the forum, but ready to read and discuss anything related to Peyronie's Disease and whatever else comes up along the way.  I'm at a weird point with my condition as where a lot of people post that their spouse who has the disease doesn't want to have sex now.  Well, I'm the opposite.. .Sure it hurts to have an erection, but I can power through that if I have a "goal" in mind.  Pressure is sometimes an issue, but we change things up in order to make it work.  Positions are a big part of this, that much I've found out...  

Mainly my concern is that one day I will not be able to have an erection or the curve will become worse and then what? So, I basically feel this pressure to have sex all the time now because someday I won't be able to...

When I was diagnosed as having Peyronies my wife was with me... When we got to the car she broke down and cried... I didn't know what to say and I sometimes feel helpless.  Last night I was peeing and she commented that the bend looked to be getting worse... Well, I wasn't erect... so it shouldn't be bent flaccid, right?  So, the last thing I told her before going to sleep was "I have no control over this, but I'm sorry."   My curvature is not bad at all... So far it's just made my girth larger... But it hurts constantly- hurts to sit, stand, etc.  Thanks for making a place where we can talk like this...

[LWillisjr]

Jeepman47,
It could get worse, but it might not. This impacts everyone differently. I highly recommend that you document any curvature when erect meaning keeping track of any further curvature or changes. You might end up with a slight curve and no more. Many doctors take a "wait and see" approach or even say it might go away.

We on this forum believe you need to be proactive and aggressive. Look into the therapies recommend here (VED, traction, Pentox, Xiaflex, etc.) Any of these could help your condition from getting worse. When Peyronies first occurs it is said to be in the 'active' phase. And that this last for 12-18 months. So this is the time to do what you can to keep it from getting worse.

Les

[Jeepman47]

Les,

Thanks for the reply.  I appreciate your thoughts and ideas.  A little more background...

I have what's called hemophilia type A on top of this... Which it's a bleeding disorder and may have been a result of my injury (which I think happened in Nov. of 2013) and since then things were rapidly getting worse at first.  I started with a slight bump on the top of the shaft about the size of a dime then.  But with my bleeding issues, they tend to make everything magnified (I'd say by about five times worse than the average person), so I had swelling, painful to stay seated, painful to urinate, etc.  It freaked me out as this was mid-December then and things were going south quickly.  I had to take my IV treatment for the bleeding disorder regularly for quite  while before things were under control again.  But then I started having more of the plaque build up, not knowing for sure I sought help at two different urologists and they told me nothing could be done.  It seems to be developing more and more around the entire penis, but I haven't noticed much of a bend yet....

OK, so back to the treatments, which docs have not been able to answer anything for me about the hemophilia side of things and treatments.  I'm in New Mexico and I drove 6 hrs to Albuquerque and 2 to Lubbock just to talk with a doc that might give me some answers.  I struck out both times.  

[LWillisjr]

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