new member-4yrs postDx, getting serious-hopefully not too late-sorry 4 long post

[edified]

I am a 66-year old man, diagnosed with Prostate Cancer in 2009, receiving open prostatectomy in 2010, with some ED post-surgery.  (I remain cancer-free.)  I had seen Dr. Mulhall at Memorial Sloan Kettering for sex rehab, and continued to follow his protocol of nightly low-dose Viagra.  A month or two after surgery, after achieving erection with Viagra, I first noticed penis curvature a bit to the left.  (Even before surgery, I had a funny feeling that my erect penis wasn't as long as it used to be, but chalked it up to the crazy emotions of my cancer year. Still don't know.)  Anyway, my next scheduled appmt with Dr. Mulhall wasn't until about August, and it was only then that I received a formal diagnosis of Peyronies.    At his suggestion, I soon began the Verapamil injections for the next few months, which did nothing but freak me out about needles in my penis.  (Note:  No ultrasound, though he did Trimix me to measure size and curvature.)  We gave up on the Verapamil in December.  
I tried to get used to Trimix injections to deal with the ED, but the emotional ordeal of the injection seemed generally to eclipse the possibility of satisfying sex.   That, and the Peyronies.  I don't recall the amount of curvature to the left, but that seemed manageable.  What wasn't was the 2 or 2 ½ inches of length I lost as well.   Mulhall had me buy a stretcher, which I likened to a medieval rack.  I tried, but it was hard to be compliant for more than a few weeks, or sporadically for a few months, with the daily stretches, or later the vacuum device that I was encouraged to try, when, last year, I visited another sexual rehab doc, Dr. Akulal at NYU.   (Note my only training with the vacuum device was the instructional video, and I may be using it in a not so good way.  I read a post on the forum that it's not helpful, and is potentially hurtful, to try to suck as much air as possible out, which is what I typically have tried to do).
Note also my sexual partner, who I married last year, has been away much of these years teaching abroad, so whatever meager sex life I had was mostly with myself.    The handful of times we tried to have sex with her (one way or another) tended to be jarringly unpleasant.   Relationship became pretty sexless.   I was pretty ok with that, partly because orgasms post surgery produce about as much pleasure as a satisfying belch, and also I'm sure due to all the performance anxiety I had about not being able to perform.   For her part, she seemed largely to resign herself to this.   At least until Monday, when I mournfully brought up to her some new attempt to use the vacuum, which when I try to be diligent about seems invariably to sink me into despair.  (I used to LOVE sex.)   Anyway I was moaning and groaning to her (on phone to her, at home on the other side of the world) and she just snapped.   She told me just how tormented she was at not having a sexual partner, and having come to feel hopeless about ever having that kind of relationship with me, telling me that she felt more like a sister, or even a mother, than a wife, noting my minimal expression of even non-sexual physical affection.   (I hadn't noticed that at all.)   She told me that she hadn't wanted to make an issue of it, out of fear of making me feel worse, but now all the emotion she's been sitting on for years has burst out, and she's furious with me for not being dogged in doing everything I could to overcome, or at least manage, the Peyronies.    And of course she's right that I have not been very diligent trying to deal with this, particularly with everything I try showing virtually no trace of improvement, and just depressing me more.   Also the year of madness dealing quite proactively and exhaustingly with the prostate cancer seemed to have left me with much less fuel in the tank.    (An example of this was in 2011, when I first found your site (I think she found it for me), and signed on, seeking advice about the Verapmil injections I was beginning.   I crafted an introductory account, but as soon as I tried to post it, the site timed out on me, and I lost everything I wrote.   I did manage to post something to vent about that, but I just didn't have the wherewithal to continue. )

Well, I'm motivated to find the wherewithal now, especially with my relationship feeling totally at stake.   So I made a followup appmt with Dr. Akulal, tracked down the marital therapist he recommended (Stephen Snyder, MD) whose whole practice is ED-type stuff, and made an apptmt with him.   My partner wants me to see Dr. Eid, in NYC, who has a practice focused upon doing penile implants, but I don't know what good an implant would do me, if I still don't have the length for intercourse.
By the way, my main reason for seeing Dr. Akulal last year, was to explore getting Xiaflex, but he told me that he was not optimistic that Xiaflex would help me, especially since I had gotten no relief from the Verapamil.  (Question:   Does Verapamil help anybody?).    [By the way, I do apologize for the length of this post, and for all my digressions.    I would admire anyone with the patience and tenacity to get through all of it.   Not quite sure I could.]    Anyway, to finish my update, I also began taking the supplements recommended by this society, which I feel might possibly be helping me in some way.    

But as you can see, I hardly know what I'm doing.   I need to be educating myself about this in a million ways.   So I will go back to reading some more on the site.   And I so look forward to any advice from this seemingly pretty wonderful fellowship.    I am particularly interested if anyone has any strong recommendations of MDs in the NYC area (or in the Northeast?  Or East coast? Or country?).   I've been fumbling around too long, and know I need some expert guidance, and need to deal with this to the very best of my ability, which I have not done up till now.   Thanks for reading this.

edified
 

[Mending the Bend]

edified -

Sorry to hear about your ordeal, but glad to know that you are taking the initiative and are motivated to improve your condition. Briefly, I think there is no correlation between Verapamil results and Xiaflex results. I don't know Dr. Alkulal, but his statement regarding this matter makes me a little suspect.

I also received Verapamil injections from Dr. Mulhall - and I was very disappointed (to say the least), because my left curve got worse and I developed a new dorsal curve and hour glass deformity. I had been stable for a year before the Verapamil, and things started to get worse after the 4th injection. It may only be anecdotal, but I don't think my Verapamil experience is unusual.

However, my results are exactly the opposite with Xiaflex. Every injection reduces my curvature and improves my condition. If you're going for Xiaflex shots, and Mulhall is already familiar with your particular condition and plaque, it may be wise to stick with him. From what I hear, his Xiaflex patients are experiencing results better than those predicted by the study, with lower incidences of side effects.

I can't speak about the implants, but I'm sure many others here can help you with questions about that.

Regarding the 'medieval torture device' of traction, yes I get that too. It took me many failed attempts to find the right combination of length, fixation device (straps, cords, cushions, etc) and protective coverage to prevent painful pinching of penis skin (I settled on thin toddler socks) to get it right. That gets easier, and traction is unquestionably beneficial - which is something that very few remedies for Peyronies Disease can claim.

Keep fighting.

Mending the Bend

[skunkworks]

Have you tried Cialis or Levitra for the ED?

As you have a VED, it would be a great idea to head over to that specific forum and get some tips on how to use it for better results as used correctly it will help you on all fronts.

What kind of traction device do you have? As above, maybe head over to the traction specific forum and get some tips on how to use it more comfortably, as success with traction is as simple as hours in the device (at proper tension) but you can only get those hours in if you are comfortable in the device.

Are you using acetyl carnitine and ubiquinol? (at 66 you should be using ubiquinol rather than coq10)

How is your general fitness? Do you exercise regularly? Have you had your testosterone levels checked recently? How about fasting blood sugar or ha1c ?

[ColoradoSally]

Hi edified,

I just want to send positive vibes and comfort to you and, in particular, your wife.

Contrary to our social programming in much of the USA, sex is SO very important to women.  Any woman who says she's "fine" without sex, well, isn't.

I can only speak from a female perspective - Peyronie's is so frustrating and maddening in part because we feel so helpless to do anything for the man we love.  We also feel like we're in very unfamiliar and strange territory because this impacts your plumbing, not ours.  We worry that in trying to help you, support you, love you, we may say or do something wrong.  Because we love you, we fear any harm we may cause to your ego or sexuality by our words or actions.  

Just like for men, sex and touching can and are physical manifestations of love to a woman in a committed relationship.

I hope you and your lover can rekindle this flame.  As a woman, I need my man's sensual touch like I need air to breath. :-) your lady is probably not much different.

I wish you both love and strength.  Now go fight this peyronie's and love on your lady. :-). Good luck!