The road to Xiaflex with Dr. Lue

Previous topic - Next topic

0 Members and 1 Guest are viewing this topic.

ecboy

Hi,

I've been a lurker for a while.

I've had Peyronies since the beginning of 2011 at age 34.  I might have had a little pain after sex then but nothing to bring me to tears or serious bruising and a few days later just below the glans I had a bend to the left (I'd put it 30-40 degrees).  After it remained, I saw my GP and she inspected my penis but found nothing of note.  She's bright and based on my description suggested it might be Peyronies and referred me to a urologist.  Oddly, I had read about Peyronies (and forgot about it) a year earlier in a book called "Bonk" by Mary Roach.

I saw the urologist a few weeks later and based on my description also thought it could be Peyronies.  He suggested I take pictures and return which confirmed his suspicions.  It looked like Peyronies with a bend and maybe some hourglassing to enhance the bend.  He followed the current thinking at the time and took the wait and see approach.  Suggested vitamin E as it "couldn't hurt".  He recommended Dr. Lue if I wanted to pursue aggressive treatment.  My wife and I were trying to have kids and I didn't want to take any measures that might limit that.

Fast-forward to 2014 and we were able to have 2 kids, yay.  The leftward bend had straightened but now I was 40-50 degrees upward with some shortening and experiencing regular pain, not at all yay.  My wife and I limited our sex life and stopped for long periods of time.  I had the fortune to travel to see Dr. Lue while in San Francisco during that summer.  He reviewed the photos and did an ultrasound.  He saw some plaques.  He wanted me to send him additional photos from the side to see the bend for documentation for Xiaflex once he started administering it.

That fall of 2014 he was ready to schedule me.  I delayed a bit based on some of the reports and was trying to come to terms with the potential end of my sex life.  By the end of 2014 I was experiencing pain often that would interfere with my daily life.  My sex life was poor, my wife was wary of sex since the aftermath was often painful for days.  I went to ER after some very vanilla sexual activity in the beginning of 2015 as I was in so much pain.  (The ER folks were nice, did an ultrasound, but barely knew of Peyronies.  The resident suggested I see an expert.)  I started think that the risks posed by Xiaflex may be worth the chance at reducing the pain even if my sex life was ruined.  I forwarded him the photos he requested and based on those and the ultrasound, Dr. Lue thought I would be a very good candidate for Xiaflex.

A few weeks ago I had my first round spanning a weekend.  Numerous times while waiting I thought of just walking out the door as I was terrified.  I vacillated about having the shots many times leading up to it.  Bless my wife, she didn't kill me.   So, Dr. Lue examined me.  (Getting an erection on cue was not easy and not very good.)  Dr. Lue located a plaque (almost cord like) on the top of my penis that he suspected as causing the bend.  The first shots were really nothing.  I was wondering what all the hubbub on here was about.  That weekend I pretty much went about my life with little pain and very slight bruising.  Then there was Monday... I had a better erection for him to examine for round two.  He said he was going to aggressively use the drug on the plaque he could manipulate well, again on the top and cord-like.  Holy did that hurt.  Now I understood what the rest of you folks were saying...  His recommendations were to start stretching on day 2 or 3 after the shots, day 4 if I was in too much pain.  He repeated several times that the biggest failure mode was rushing into sex; wait at least 2 or 3 weeks.

That night my penis swelled up like a balloon with some serious bruising starting and I went to see one of his residents who wrapped it.  They said the bruising would get worse but the swelling wasn't the worst ever.  I took it easy and tried to not freak out (failed a little).  After removing the wrapping the next day my entire shaft was bruised and swelled up a little but not as bad as it initially was.  He and his staff were patient with me through phone calls and emails and they repeated not to worry, the odds were in my favor and this was nothing for serious concern, the pain, swelling, and bruising would subside.

I was still very worried.  I read all the Xiaflex documentation, injection manuals, and pamphlets.  Maybe that helped put my mind at ease about what to expect and to understand exactly what Dr. Lue did but it was still worrying regarding the warning signs.  Penis is red, black, and blue, damn thing hurts, and now I've got start stretching... (I inquired about traction devices, but he recommend manually stretching as the best course of action.)  His instructions were for more often and longer than the Xiaflex instructions.  Day 3 I stretched a few times.  The swelling was down.  Soon after starting stretching, my erections were non-existent.  I was depressed about that but also the pain was much reduced and my 'normal' pain was gone.  My wife bought me a card and flowers.  Again, Dr. Lue and his staff were patient with my questions and worries.  The take away was not to worry, there was nothing there that was of a serious or uncommon.  Again, no sex for 2 to 3 weeks!

Now it has been a few weeks; the swelling is gone and bruising is much improved.  I think I'm a little sore from the stretching but lo and behold my erections have returned.  Could have just been sore, could have been worry and psychology, but I have some hope of sex in my future. :)

I haven't measured the bend yet.  Maybe after the full six weeks I will; maybe I'm superstitious and don't want to count my chickens before they hatched.  It looks straighter, fuller, and the bend before the glans looks slight.    The whole thing seems firmer and the pain in the penis is gone.  I still have some pain in my groin which I think is a result of the stretching.  I'm not sure I'll do another round, I may not need to.

I hope those of you considering Xiaflex find some hope in this.  My take away from this experience is find a good doctor, one who takes the time to listen.  I appreciate my GP who is wonderful for referring me to a urologist and her knowledge that such a thing as Peyronies was a possibility.  I appreciate my local urologist for knowing his limitations and recommending Dr. Lue as the only man he would have work on his penis.  I appreciate Dr. Lue and his staff for their care and expertise to give me hope for a more normal sex life and for getting me to a day with little pain.



james1947

Thank you for posting your experience ecboy.  :)
Wish you excellent results.
Please be kind and post the summary of your experience here:
FORUM XIAFLEX RESULTS - Peyronies Society Forums
It may help others to decide to go on this way.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Pfract

Indeed, thanks for sharing. Good luck!

Voglin

"My wife bought me a card and flowers."

Brilliant, you lucky man!

hope4all

Thank you ecboy for your detailed post. I used to be a lurker on here as well and reading posts such as yours really made me feel better.  It's great you are having less pain, and I would agree with you that the pain in the groin area is probably from the stretching.  I have that occasionally.

I'm 9 days out from my 3rd round (6th shot) and the bruising is almost gone...it's taken longer this round. I must say each round has had different results except for the end result of bruising.  I wish the resulting softness of the plaque from the shot stayed that way a little longer...I can now feel the plaque hardening a little more each day. But the plaque seems narrower than pre-Xiaflex, and a large nodule I obtained from Verapamil shots has completely disappeared. The band I had towards the glans is almost gone now and I've gotten all of my girth back. The band was still there after round 2 and now during erections it's clearly no longer there!  

Please keep us posted on your recovery and good luck!
hope4all  

james1947

hope4all

Can you make a post regarding your results please on the link bellow?
FORUM XIAFLEX RESULTS - Peyronies Society Forums

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

hope4all

Hi James. I definitely will this weekend. I haven't gotten a detailed look at my curve since the last shots 9 days ago but will have time this weekend, and then I'll post.  

Thank you again for putting that together, it will be extremely helpful for those considering Xiaflex.

Curvature15

Hi EC boy,

Saw Lue for the first time yesterday.  He doubled my Trental dosage and took an Ultrasound.  Wants to see me in 90 days... Just wondering how things are going?  I read your last post.. Trying to determine if Lue is my choice to do this....?

Thanks for your post and time!

Robert

ecboy

Hi Curvature15 & co.,

So its been 7 weeks from my second injection.  I've only had one round.  Last week I started on 400mg 3xDay.

Anyone here familiar with a pinball machine called Cyclone from the late 80's?  It would yell things like "Hey, you with the face!" and "Ride the ferris wheel".  It was roller-coaster themed.  That's kind of what I feel the recovery from the round of injections has been.  FYI TL;DR I don't seem to be any worse for wear, I'm improved in pain, and improved in straightness but its hard to tell exactly how much.

So shortly after my last post I think I experienced what some of you had where you feel like something pulled apart while stretching.  So that was frightening, painful, and slightly bruising.  It would seem that my plaque cracked, broke, or what not.  Needless to say, I took a little trip down to see Dr. Lue who assured me after an examination and ultrasound everything looked good and that the plaque is a bit softer.

So the game seems to be played like this during the six weeks of stretching... I feel better, erections returned, stretch regularly, and then some pain, erections leave, keep stretching, feel better, and loop.  See?  Roller-coaster.

The pain portion of the cycle got less and less duration each time.  I think I went through the loop 3 or 4 times.  Had a little roll in the hay and everything seems to work.  I was a bit achy/sore in the hours afterwards and that may have taken up to 36 hours to go away.  I'm told I don't need to stretch any more, that I'm still healing, and the full healing process could take more than another 2 months (hence the pain).

Today I feel well; something's been giving me these light headaches (could be the Pentox, could be lack of caffeine, dammit).  I feel better than I did before the treatment with no pain and regular erections on a good day.  My not good days have been achy or light pain which a least don't interfere too much with life.  I feel like chasing my wife around the house a bit, she's still a bit apprehensive, and we will need to cautious.

I think Dr. Lue was a great choice for me.  He answered my questions and still does.  He has a broader base of Peyronies patients than any of the doctors I would have seen closer to home.  If you are still making the decision, I can't lie to you and tell you its an easy decision or that Dr. Lue is right for you.  I weighed what I had (pain, often) against the potential Xiaflex horror stories read here and other places then looked at the odds.  I listened to Dr. Lue's track record and what my local urologist thought of him.  Time will still tell regarding my full recovery but I have no regrets with the path I took.

Good luck with your decision and I hope you find the outcome you're looking for!

Curvature15

Ecboy,

Well said! Thanks for the thorough update. The headaches are definitely the Pentox. I don't think I can get to 800 mg 3 times a day.  But 400 3 times a day will give you headaches. If no ringing in the ears then that's good!  Well as of now Lue is my guy. He's close as I'm in the southbay and that's important.  I'm having a few calls with other Peyronies specialists to ascertain any common threads for treatment.
I get the feeling I'll be going down the Xiaflex road as well. Will post to all if I do.

Best

Robert

hope4all

Thank you for posting your experience ecboy. Please keep us updated as you go along. It sounds like you making good progress early on. Good luck to you.  
hope4all.

nemo

Headaches, yes.  I went cold turkey off Pentox at one point and for several days had bad headaches, just like when I went cold turkey off coffee for a while. There's a caffeine-like quality with Pentox that I don't fully understand, but it's there.  

Nemo
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

wd6113

Ecboy- how do you get ahold of Dr Lue?

I've had a terrible time getting anything done with Peyronies.
I've been through three urologist and have still been getting the runaround.
The last one came highly recommended,even from this sight.
Ilive in Indiana, so any help would be appreciated.

wd6113


ecboy