new member

[ziogwe]

Hello I am new to this forum.  I was diagnosed with peyronies last October after noticing a distinct bend in my penis last year around that time. I don't know how I got it, but think I had it much earlier because I noticed pain during erections prior to really paying attention to the bend.   I would say right now my bend is between 20 and 25 degrees to  the right.  It has always naturally curved to the right, but the distinct bend is something new.  I have been using androidpeyronie 3 - 4 hours a day for about a couple of months now but it's hard to say if it has been helping because I've never measured the bend before starting to use it.

I've only had one sex partner which is my wife but now my sex life is non existent. I don't even remember the last time we had sex.   She doesn't want to be intimate with me anymore and I've given up any hope of ever having sex again. It wouldn't surprise me if she is seeing someone else on the side now.   Right now I just use my fleshlights and that seems to be the only thing I'll be able to do from now on.  from my experience, women don't want a crooked penis inside them so at 38 my sex life is over.  

My urologist doesn't want to do anything until waiting a year so other than my traction device there is nothing I can do.  Even after waiting a year, the only options are non proven expensive injections or surgery to shorten the penis.  I've already lost around an inch because of the scarring so surgery is not an option.  The bend is embarrassing enough.

I'm also dealing with a much more serious disease that will require a organ transplant so it's hard just focusing on my peyronies.  

I just want this all to end one way or another.

[Jonbinspain]

Firstly, find another urologist!  This one sounds completely useless - waiting is the very worst thing you can do. This disease resolves itself spontaneously very rarely.

Read all you can here on the various supplements and medications that are the most highly thought of. These include, Citrulline Malate, ALC, CoQ10, low dose Cialis. If yiu can get another Uro, ask for Pentox.

As to your wife, it's hard to know what to say. If she can't support you through this, then you have some decisions to make!  A woman who really cares wil see you as more than just a crooked penis.  

[ziogwe]

I took your advice and found a new uro.  This doctor is at the same hospital where I'm going to have my organ transplant.  He confirmed it was peyronies but unlike the last doctor he seemed much more interested in treating it now.  He prescribed me pentox and has scheduled an ultra sound.  He also mentioned two types of injections depending on what the ultra sound tells them.  Xiaflex - he said this one is really expensive ($8000 per injection) and he generally avoids using this because there are some potential serious side effects as well.   Verapamil - this is the one he said he usually uses for injections and could be a course of action depending on the ultrasound and how I do with the pentox.  

I told him about the andropeyronies device I am using and he said it would be okay for me to keep using it.  

[hope4all]

Proceed with caution on the Verapamil. It's super cheap, yes, but not proven as much as the Xiaflex is. They work very differently and are administered very differently. The Verapamil shots are more aggressively shot into the plaque and the doctor usually tries to poke the needle through the plaque in many different places. The theory is it causes a swiss cheese effect and will hopefully break the plaque up. Because it's a generic drug and there is no monetary gain for anyone it hasn't been put into trials like Xiaflex. It's used off label.

The bruising is usually only confined to the penis but still looks like a bat was taken to you penis. With the Xiaflex the bruising can and often does spread to the scrotal area. They are both unsightly but both subside within a week depending on how you heal individually.

The verapamil shots caused me to gain a large nodule/knot so i stopped after 6 rounds of the prescribed 12 shots. Plus the doctor had to use a numbing shot that hurt like hell. The numbing shot was needed because the verapamil shots are so much more forceful then the Xiaflex.

Xiaflex is only as good as your doctor, in my opinion.

[LWillisjr]

She doesn't want to be intimate with me anymore and I've given up any hope of ever having sex again. It from my experience, women don't want a crooked penis inside them so at 38 my sex life is over.  

Be careful about making broad assumptions base on 1 point of data. My wife quite enjoyed a crooked penis. I would encourage you to talk about this. There is another reason why she doesn't want to be intimate. I find most problems between a couple is misunderstanding or bad assumptions. She might be assuming you aren't interested. My wife ALWAYS wants to be intimate with me because she loves me.

Don't assume, it is tough, but talk to her.

[ziogwe]

Went in for my ultrasound today, with sobering results.  Turned out my measurement of 20 degrees was way off, the doctor measured it and he said it was closer to 50 degrees.   I was just measuring the angle where the curve started, but apparently that isn't the correct method to measure.

He said it may never be straight again but verapamil may help reduce the curvature.  I'm not sure when he will want to start the injections, I have to come back in a month for another visit to explain the course of action for the injections, then probably wait another month or so to actually start them.  That's if insurance will cover it.

Between this and needing a double lung transplant (pulmonary fibrosis; no known cause) I'm about ready to give up on everything.  

Of course the lung disease is more serious, but having to deal with that AND another BS disease that I didn't do anything to cause makes me wonder if being dead is really that bad.

[james1947]

ziogwe

Sorry to hear about your other problems.
We have a Verapamil board and very few forum members got good results from Verapamil. Many get worst or much worst after the injections. I really don't understand why urologists still proposing Verapamil injections!!!
You have now the Xiaflex option that is much better.
In my opinion your urologist is not updated with the new treatments. I was seeking a Peyronies specialist to get a second opinion.

James

[ziogwe]

Yeah, I'm not too confident about verapamil either after reading people's results from this site and around the web.  Xiaflex seems like the best option if I were to go through with injections but the uro seems like he doesn't want to try it due to the cost and potentially serious side effects.   He didn't seem as compassionate today as he was the first time around.  He seemed like he was in a hurry.  I had a trimex injection to stimulate an erection but it didn't really seem to do anything other than create a semi hard erection with just half of my full size.  Instead of waiting for a full erection, he just took measurements from my partial erection.  

After the injection aand examination, I had to wait for an hour in the waiting room and come back to make sure it was going down.  If I had not asked about treatment options then, I would be completely in the dark for the next month.  He seems set on wanting to go the verapamil route and I'm not really sure if I want to anymore especially if it can make things worse.  

I have been using andropeyronies for about three months now but obviously there hasn't been significant improvement.  Maybe I'm wearing it wrong or not long enough per day.  It's very hard to keep on because the straps and nooses provided don't hold it in place very well.  It usually slips out after two hours and doesn't stay put when I try to put in back.  I've experimented with different methods to keep it in place but none are particularly comfortable.  I am looking into a different device and x4labs and proxtender seems to be top choices, I just don't trust their infomercial like websites.

As far as my wife is concerned, from our brief conversation today she isn't interested in sex anymore; at least not with me.  So I guess that's a blessing in disguise since I won't ever have to show my bent penis to anyone ever again.

 Even after my lung transplant I don't think I'll ever be able to be in another relationship again because I don't want someone else to be repulsed by me like my wife is.  She already isn't very supportive of my lung disease and only does the absolute minimum to help me out, so sounds like she only was in it for the sunny times.  Without my other family supporting me I don't know where I'd be.

Obviously I'm depressed about everything but getting to the point where I don't care anymore.

[ziogwe]

At this point I'm strongly considering not doing anything drastic like injections until after transplant.  I have a suspicion that I'll get the transplant call during my injection regime and I don't think my transplant doctors will want me to do those injections while I'm recovering from surgery.  I'll try to be more diligent with my traction device even though it's gets very uncomfortable.

[james1947]

Right decision ziogwe

James  

[james1947]

This topic reached his "End of life" as introductory topic and will be locked.
Please discus different issues on the adequate boards.

James