Hello.

[Breadbug]

Hello there. February 19 was the one year anniversary of my initial injury. I have been through a ton since then.

The evening of my injury ( a rupture during initial penetration during a sexual act. My partner made a sudden and abrupt movement and POP!) it hurt like hell but I was able to urinate and there was no visible blood so I decided I didn't need to go to emergency since I already had a doctors appointment the next day. I went to that appointment and my doctor told me there was little that could be done and that many cases heal themselves. ( boy oh boy do I know now that was a huge mistake.) I was told to put ice on it and it would heal in about 8 weeks. Well, it didn't!!!

Several weeks later, and two more doctors later, I finally got a referal to a urologist and ended up with urologist PA. He told me that it was a shame that I had not had emergency surgery and that it was too late. After practically begging for any alternative treatment during the acute faze he finally prescribed vitamin E and L- Arganine. In the days that followed I exchanged many emails with that doctor about the pain and asked about traction devices and other things I found online. I was finally sent to see a licensed Urologist about 5 weeks later. He performed a cystoscopy and talked to me about vacuum devices and continued to tell me again that nothing could be done but waiting.

I kept the ball rolling and over the course of the next 9 months I saw 6 more urologists. They all gave their sales pitch for plication or implants as "the" fix after the acute faze stabilized. Not one ever changed the treatment of the acute phase from vitamins and acid. Finally I got an appointment with Dr. Lue at UCSF. He was the first doctor to ask to see my penis erect. He was the first to use ultra sound to establish the effect of scarring. He had me discontinue the vitamins and acid and gave me Pentoxifyllin. He told me I was a perfect candidate for Xiaflex.
Ok, so what in the heck were all those other doctors thinking? Why in the world had they not at minimum suggested the pentoxifyllin?!!! Months had gone by. Scars developing unchecked for 10 months.

I am now involved in a law suit with all this. I am hoping to be able to have Dr. Lue do the xiaflex injections before the onset of calcification. I am at about 80 degrees now. As a realist I am not expecting a perfectly straight penis. With xiaflex I hope to get at least 50 % return. I can function with some curve. Many many do. At 80 degrees it is totally not useable. I also have girdling at the end and it hinges. I can still become erect and there is some pain with erection and more so when I ejaculate. I am not interested in pursuing any none reversible surgery at this point. I have read many horrible patient stories with both plication and implants. The current "in plan" doctor wants to do surgery. I want Dr. Lue.

So, I am now waiting for the results of Arbitraion to hopefully get the funds to move forward with Xiaflex.

[Jonbinspain]

Your story of incompetent, or ignorant Urologists,  is all too familiar, unfortunately. However, from what I know of the opinions of forum members, you're in good hands now.

Here, surgery is considered the very last resort if all else has failed. You can find a three on the site with reports from those undergoing Xiaflex treatment.

To the Pentox, I would add ALC, CoQ10 or Ubiquinol, and, if not too expensive, low dose Cialis. I would also suggest that you look into both traction and VED therapy. Again, You can read about these here on the site.

Any questions, just ask. There's usually somebody here who can provide a helpful response.  

[Breadbug]

In the very beginning I purchased a traction device and decided not to try it based on the study that it effects only the healthy tissue and can damage the healing tissue. I am curious though about the combined use of traction and xiaflex. I asked Dr. Lue about that and he dismissed the traction device as useless. The current doctor at the "HMO" told me yesterday that my "better than 80 degree" disformity doesn't conform to xiaflex and is again pushing me to surgical methods. He just doesn't get that I am not seeking a perfect penis!!! Just a functional one. 30 degree correction with non surgical method is better to me than non reversible surgery.

I did have a low dose Viagra prescribed early on and was advised to discontinue due to drug interactions. It was giving me terrible headaches anyway so I wasn't a fan anyway. I will look up the others you've suggested. I haven't heard of them yet so a digging I will go.

Thanks so much for the forum and thank you for the reply and info.  

[dob32]

I just had the surgery and was back at work two days later! But maybe us ozies a little harder than you guys
I went to a doc who referred me to a specialist who then referred me to a specialist in this area. He is Australias number one in penile implants etc. He said could get my penis pretty much 100% straight and my health cover made it a $50 operation.
The xiaflex was going to cost 1200 an injection as health cover will not cover it as not proven. But i can still get injections if i want to get rid of the hour glass look! Even tho i had surgery.  

[Breadbug]

Today I finally got a phone call from Dr. Kira's office telling my that my new insurance carrier has approved the Xiaflex. It has been almost exactly 2 years since the date of my initial injury. I am excited and scared about the injections. I've read so many accounts of Xiaflex here in these forums. I fear the pain and the swelling. I fear the time it will take to get back to functioning. Non of that fear is stopping me from moving forward with the injections. I am at better than 90 degrees now. Any chance that I can get a more usable member without the Plication surgery, or any surgery for that matter, I am willing to try and endure. I am seeing one of the best Uro's around so that is the best that I can do to manage the risk of failure and mistake. I am optimistic that there will be some restoral. I wish that it would also effect some regain of length as well but I'll take what I can get at this point. Ive searched for pics of post injection scenarios but haven't found any. My appointment is 2/23 for first injection. Wish me luck.  

[Breadbug]

Not Dr. Kira!!!! Dr. Lue. !!!  

[Pey-penis]

Xiaflex is mainly used in Dupuytren's contracture. For use of this drug by injection doctor must be specially trained. The injection should be done exactly in the place of union which is not easy otherwise the patient can make trouble and additional adhesions. Then in case of Dupuytren's doctor straightens by force (slightly) a bent finger to stretch the union on the tendon. Translated into Peyronies injection can be made directly at the place of union (accurately) and then you have to stretch union, for example using VED. I'm not sure if you can do it in a painful phase when still occur adhesions and inflammation or only as a wound heals. Ask Your Doctor about it is important.