UK Xiaflex Trials

[james1947]

paul warwick thompson

See  my answer bellow to tunnelman


James

[Voglin]

Hi paul warwick thompson

I am just finishing a trial with Mr Ralph's clinic and awaiting the results in April.

If you have any questions please ask me.

[james1947]

Voglin

Please open a new topic detailing your experience.
It will help others that want to go on this way

James

[Voglin]

Thanks for letting me do this james I certainly will.

I get my final results on 10th April so probably best to wait until then.

[james1947]

Don't need to thank me Voglin, this is how this forum is working, trying to help each other.

James

[AnonK]

I'm new to this forum and to be honest a little apprehensive. I've had Peyronies for 11 years and apart from my wife and Doctor have never discussed it with anyone.  The reason I'm posting this is that I'm about to have my first Xiaflex injection on Saturday and wanted to know what your experience has been of Xiaflex.  I don't yet know if I'm one of the 50% on the trial that will undergo remodelling, but I would like to know what that actually involves?  Everything I've read leads me to believe that after the injections you are left bruised and sore.  Is this soreness to the extent that you are unable to function ie work, gym, for a period of time?  My level of bend has been calculated at 55 to 60%, with a shortening of around an inch.  Any help or advice you may be able to give will be gratefully received.  

[hope4all]

Hi AnonK. I started with the same bend as you and it's now down to about 30 degrees before my 5th shot. There will definitely be bruising and swelling, possibly even redness. It's very tender to the touch and if it's inadvertently bumped into you'll know it.  

I usually have my shots early in the morning and am able to work the same day, no problem. I've even gone for runs the same day, with all my junk somewhat compressed so there is minimal movement going on down there. It's important to stay active and keep your endorphins pumping. This disease can get the best person in the dumps so do what you can to fight that, exercise definitely helps with depression, for me anyway.

Nighttime erections will probably wake you up in the first several nights at least once but that's a good thing. It gives you the opportunity to do the straightening exercises.

If you would like to see pictures of what my angry member after the shots I'll be happy to oblige. That way you will know I lived through it, had my temporary discomfort, but soldiered on and now I have all my girth back and my curve is more manageable, and hopefully will be below 20 degrees after my last treatment!

Congratulations on getting in the trials and I wish you the best of health.  

[AnonK]

Hi hope4all
I appreciate you taking the time to reply.  I've also been contacted by someone who underwent the same trial as I'm about to start and he too had good results, so I'm going into it with my eyes open and hoping for the best.  As I blogged previously I've had this disease for eleven long years and can honestly say that not one day of those eleven years has been the same as pre-diagnosis.  Before Peyronies I was a successful salesman but eventually couldn't face clients with the same enthusiasm and lust for life that had made me successful.  I now do a solitary manual job and estimate that over the eleven years have earned over £100,000 less than I would have  in sales.  And I work longer hours to achieve it!  As a man that was brought up in a very macho environment I was very confined by what the definition of a REAL man was, and so to see my manhood disappearing just completely stripped me of my self esteem.  They say time is a healer but I've never come to terms with it. Diagnosis, severe depression.  Another disease that as a REAL man you can't talk about.  I still wake most nights in a panic feeling almost tangible grief for the man I use to be, that I'll never be again.  But the real regret for me are the eleven years that my Son has grown up without the Father I wanted to be for him.  When your whole existence is haunted, laughter doesn't come easily and I know that's his perception of me.  I do understand that Xiaflex is not a cure and I'm honest enough to recognise that I'm probably hoping for too much.  But where do I go if this fails??? It won't give me back the relationships I've ruined, but if it is successful hopefully it will help me come to terms with whatever future I may have.  Maybe I'll even be able to laugh with my Son occasionally!  Tomorrow is my first injection and I will try to update on how it's going. Who knows maybe it will give a glimmer of hope to someone else.          

[james1947]

AnonK

First, I wish you excellent outcome from the Xiaflex.
Wish you get back your manhood as it was before or at least close to that.
But not connected to the results of the Xiaflex treatment, you should make a timeout and re-think about what life is.
Especially laughing with your son!!!
Believe me I grow up in a not less macho environment, where at age of 11 if you are not smoking and don't have a knife in your boots you are not a man, but you must make a reset and see other sides of the life, not just your manhood.
I am 67, have Peyronies for 6 years and a 5 years old daughter, being busy with her make me forget that I have Peyronies

James

[hope4all]

AnonK. Relate 100% to your situation and I'm really sorry to hear how this has turned your life upside down.

I went through severe depression and still have my good and bad days. I always enjoyed sex and when this happened I was 41 and still feeling like a stud, dealing with the onset of middle age, but having a lot of fun in the sack. I was really pissed that Peyronies Disease took away my manhood and changed my personality from outgoing to introverted and brooding. It took several years to snap out of it.
I've suffered from depression on and off since my 20s and this brought it to a new level of low. I got back on meds and I'm doing better now along with some exercise, not enough exercise but some. When I'm not traveling I work from a desk so I got a stand up desk and now stand all day and work which has given me some relief in my crotch and is suppose to be excellent for your health as well.

You can turn this around, you can change your thinking...I know macho guys don't like to ask for help in the psychology department, but talking to a therapist definitely helped me and the meds did too. Depression is just as insidious as Peyronies Disease and you have to actively get involved with both. If I were you I would concurrently treat your Peyronies Disease and Depression. Good luck AnonK with the treatment!