Would you recommend Xiaflex?

[tbar99]

Hi guys.
I'm new to the forum and feel lucky to have found it.
I hope I'm posting in the right topic.  I'm doing my best to search through all the information in the forums but I'm in a time crunch as I have to decide this week whether to pursue Xiaflex treatment.
I'm hoping some of you will take the time to read and offer any information or advice.'

I (46yo) went thru a spell where I was off treatment for extremely low testosterone.  During this time I wasn't getting erections.  Once back on treatment, regular erections returned.  But there was noticeable differences - a slight upward curve, an inch and a half shorter and lose of girth.  I have no idea the cause.
I asked my PCP about it and he referred me to a urologist that diagnosed Peyronie's Disease after a very brief 2-3 minute exam.  I did get a second opinion from another urologist who was more thorough with exam and asked for picture of erect penis.  He too diagnosed Peyronies Disease.  However, both urologist seem surprised when I told them about how much length I had lost.  Question #1 - Besides Peyronie's Disease is there any other explanation for the loss of 1.5 inch, or is this common with Peyronies Disease?
The urologist I saw that I liked the best mentioned Xiaflex as a treatment and had me sign a form to see if my insurance would approve it.  Question #2 - Just having Peyronies Disease for 6 months, is it too soon to do Xiaflex treatments?  My insurance approved without any issues.  Now the pharmacy is contacting me to schedule the shipment.  I really want to consult with the urologist again before deciding to move forward but his office is giving me the runaround.  They just want me to schedule the shipment and then they'll set up the procedure.  It's been six months since I had the consult.  Is it too much to ask to have a follow-up before committing to a somewhat invasive procedure?
My curvature is right at the 30 degree mark.  I don't necessarily hate it and could live with it.  My main concern is the shortening and lose in girth.  Before this started, I had a fairly straight 7 inch, which was nearly perfect for getting to and hitting that sweet spot in my partner(s).  Now at just barely over 5.5 inch, sex for my partners is not as enjoyable, try as I might.  It's completely killed my self confidence.  I went from above average in size to the minimal end of average.  
I never could get a clear answer from my urologist as to whether Xiaflex will let me regain that lost length and girth. Question #3 - Does anyone know if successful Xiaflex treatment(s) will bring back that loss in length &/or girth?
I've also had a noticeable lose in sensitivity to the point it's difficult, often impossible, to even reach orgasm.  Which also doesn't help the self confidence.  Question #4 - Is loss of sensitivity also a common issue as a result of Peyronie's?
The small lump or plaque is around 2cm down from the head on the top side of my penis.  I have a healthy, rather large vein that runs right over it.  Question #5 - Should I be concerned with getting Xiaflex that close to a very large vein?
Please know I realize my case is no where near as severe as most and I can appreciate I'm lucky it's not worse.  Just given the chance to have the Xiaflex treatment, should I take it now given it's covered 100% if done by end of the year?  I fear not having the same insurance coverage next year and would likely have to pay-out-pocket, which I can't afford.

P.S. I've tried a couple of different traction devices but no luck with either.  

I apologize for such a long post.  Thanks so much for reading and any responses.  

[curved]

tbar99-  Here is my 2 cents as it relates to Xiaflex as I went through 4 rounds (total of 8 injections).  Hopefully others will add their perspectives as well.  As best I can tell results have been a bit all over the place with some having great success and others not having the outcomes they would like. For me, Xiaflex worked at first and I went from a 35-40 degree downward curve to just about straight.  Unfortunately Peyronies Disease came back and I ended up with a 90 degree curve upward.  The second onset on Peyronies Disease could have been caused for a variety of reasons from genetic to additional trauma caused during intercourse or some combination.  As to your questions:

1- Loss on length and girth is definitely a side effect of Peyronies Disease.  The plaque won't allow your tissues to expand hence the contraction, curvature and loss of length.  I lost at least an inch and had severe narrowing in the middle of my shaft.  I don't know of any other condition that may cause the loss of length but I imagine there may be something out there

2- 6 months from the onset of Peyronies Disease would seem to be at the early end of when to start Xiaflex.  I believe the protocol is to only administer Xiaflex in the chronic stage and it is important that the acute stage of Peyronies Disease (generally thought to be first 6 months but will vary by person).  I had my first Xiaflex dose 6 months after my diagnosis

3- I did regain some length and girth through Xiaflex.  The concept is that the Xiaflex will break up the plaque and allow the tissues to expand again... so regaining length is a real possibility.... but, again there are no guarantees of success with Xiaflex

4- Loss of sensitivity, especially where the plaque is is definitely a side effect.  I still have plaque today and where it is located is less "sensitive"

5- I can't really say if the vein will cause an issue.  I do suggest that you go to a Uro that has a ton of experience administering Xiaflex shots.  While Uros are supposed to be "certified" to administer Xiaflex I think that just means they had some sort of training and not necessarily hands on administration of the shots.  For instance, my original Uro administered Xiaflex when I had a downward curve.  I found out later that you are not supposed to administer Xiaflex for a downward curve because there is a significant risk of damaging the uretha.  I imagine an experienced Uro would attack the plaque from the sides and thus avoiding a shot directly on top near the vein.

Some other thoughts....in no particular order

1- the shots suck they can be painful even with the topical numbing cream they give you but they are over within 30 seconds or so
2- I had several painful hematomas which are a possible side effect and are scary to look at but generally will go away on their own
3- Modeling is extremely important part of the process.  While not endorsed by all Uros I combined Xiaflex with a traction device for my last 2 cycles and that is where I made the most progress
4- Highly recommend you have Uro wrap your penis with Coflex after the shot to keep swelling down
5- Most Uros do the shot by feel but some use the dopplar to make sure they are getting the plaque... something to at least ask about

Feel free to PM with any questions

[TDix]

I will chime in and say make sure your uro knows what he's doing.  If he hasn't done tons of Xiaflex injections, find someone who has.  I had the worst results possible as a result of my injections, but it doesn't mean you will.  I don't think the injections alone will regain you any length unless you really work on traction as well.  Also, these injections cause a lot of bruising, hematomas, pain, etc... and you need to be prepared for that happening twice in a  week or so, and then no sex for two weeks, and then 4 weeks later doing it all over again.

[samsung]

What happens if you get nocturnal erections during that 2 week period? I know if you masturbate or have sex you risk corporal rupture, but you can't stop natural erections.  

[tbar99]

Thanks so much for your responses Curved and TDix.  
I was happy to see my urologist listed on this site and from what I've found, he's the best in the area where I live and has a lot of experience treating Peyronie's and with Xiaflex treatment.  I only saw him for an initial consult where he diagnosed Peyronie's and he only briefly mentioned Xiaflex.  Hopefully I'll hear from his office about scheduling an appointment with the doctor to discuss Xiaflex in more detail and can then make a decision.  But I think a guy can get as much knowledge from other patients who've gone thru Xiaflex treatment as from the doctors themselves.  That's why forums like this are so beneficial.

Maybe I'm just being stubborn, but in my case, the curve is relatively minor (I can post pic if that's allowed) but have lost a significant amount in size.  I do understand how plaque could cause penis to not fully expand.  It's just hard to understand how a tiny little knot can make 1.5" disappear.  And as for the knot, it actually seems smaller than it was initially.  It's almost hard to find now.  But yet I've still lost size since then.

I'm curious too as to Samsung's question regarding nocturnal erections.  Can they give something to hinder erections for a short time?  I wake up several times a night and always have an erection.

TDix - do they do anything to treat hematomas?  I have a history of blood clots (DVT & PE) due to a blood-clotting disorder so bleeding, hematomas and bruising really make me nervous.  And some of the pictures I've seen with side effects are rather scary.

Thanks again guys.  I greatly appreciate you taking the time to post replies.

[TDix]

For me, when I got hematomas, especially when I got one on the side of my glans the size of a grape I immediately went to the ER.  What did they do?  Call my uro who just came in and drained it