Peyronies Society Forums

Read This First => Introduce Yourself => Topic started by: bakeratj1 on November 09, 2019, 02:23:37 PM

Title: New to this forum
Post by: bakeratj1 on November 09, 2019, 02:23:37 PM
Hello all,

My name is Andrew. I'm 45 years old and retired from the U.S. Army. I've already done one 6-month treatment of Xiaflex (4 rounds of 2 injections every 6 weeks). I'm about to start another round of Xiaflex in two weeks. I also used the Penimaster Pro during the first treatment and I just started using the RestoreX for the past 2.5 weeks and will continue to use this during my next 6-month treatment.

This is the first time I've looked at a forum and I have a few questions I hope someone on here may have some answers too. I just got approved to be a pilot by the FAA and this is keeping me grounded. The VA will pay for my commercial license but I will have to move to another state for that. I first need to get my private pilot license and I can do that locally. Here's the problem, I don't want to spend money getting my private pilot license and then be stuck here due to the ongoing treatment of Peyronnie's as there are not a lot of doctors who specialize in this.

This is a little off subject but it's important because I feel I can't live the life I want to live because I don't want to change doctors again. This second round I'm about to start is with a different doctor than the first. I'm posting this because I'm sure Peyronnie's is slowing other peoples lives down too. Here's my first question: Any insight on how to deal with this particular type of issue would be nice.

Here's my history with peyronnie's.

I've always had a little curve my whole life but nothing to worry about. I actually saw it as a blessing because it was good with the ladies if you know what I mean. In 2018 my penis just started curving dramatically to the left and a little upward. The first doctor who treated me recorded the main curve at 60 degrees 3 inches south of the glans (head) on the left side.

This curve was making it difficult to have intercourse and if I pulled out too fast it hurt my partner. I started the first round of Xiaflex while taking 1000mg of L-Argenine. All injections were administered 3 inches from my glans on the left side. This curve improved by about 30 degrees however I was still having difficulties with intercourse. This leads to my second question: It seems each time I have sex it feels as if my penis is trying to go back to it's 60 degree curve. I'm guessing it's because I'm not able to apply counter pressure while having intercourse. Anyone else have this problem? Just this morning I got an erection and it felt like it was curving dramatically left yet when I looked under the blanket it's still at 30 degrees. I know I'm not crazy. Bare with me. Please read on.

At the end of the first 6 months of Xiaflex I met with the Heath Care Practitioner (HCP) and told him I wanted to do another round of Xiaflex. He told me I needed to accept this as the best it's going to get and the next step is surgery. Why would I do surgery if I got an improvement??? That's just crazy. I later found out he didn't want to deal with the insurance company on getting it approved. He also didn't want to see photos of my erect penis. I brought in on two occasions to show the improvement rather than getting an injection for an erection. My girlfriend was with me and we both found that very odd. It's a urologist's office, you gotta be kidding me. Needless to say, I started shopping around for another doctor. I found one and later went back to talk with the actual doctor about his Practitioner. I really like the doctor and felt he needed to know not only for his business but for his patients. He appreciated the constructive feedback.

I found my current doctor in the next big city away (3 hr drive) and he had no problem looking at my pictures. He was even delighted (I know that sounds creepy. What I mean is, he was very professional. You could tell he genuinely likes his job). Immediately he said, "It looks like you have a plaque located at the top/left at the base." Here's why I like this guy.... my girlfriend and I suspected one at that location and I didn't even mention it to him yet. (The previous doctor never did an exam on me. His practitioner did.) The visit with the new doctor was a month ago and it's now hurting at that exact location. This doctor also did an exam right after looking at my pictures where he confirmed he felt a plaque in that exact location and also one directly on top, about a half inch from the base. He did not feel a plaque at the left curvature 3 inches from my glans. The two plaques located at the base are obviously causing my upward curvature. This leads to my second question: Can a plaque at the top/left of the base also be causing my left curvature 3 inches from the glans to???

He showed me how to feel them. I did fell them but haven't since. Weird. He then sent me to get an ultrasound where no plaques were discovered. (My previous doctor never did an ultrasound.)

The new doctor prescribed me Pentoxifylline- 400mg 2xdaily, Cialis 5mg daily, and L-Arginine 1000mg daily. (I take L-Arginine 3000mg daily since I'm still waiting for the Cialis to be approved by insurance). He also told me to switch my device to RestoreX. I call this the penis guillotine! This thing sucks!!!

Here's the positive... I have a great girlfriend who is very patient with Peyronie's.

If anyone can answer the three questions I have above in bold that would be nice. I think the first second might just be psychological. The third is just to give me hope. That plaque (top/left) hurts whenever I have sex now and is sore afterward for a long time. Two weeks until the injection, I can't wait!!! I hope I get some relief there!

Question 3: Has anyone else tried RestoreX? If so, did it help you?

I'm sorry we all have to deal with this. I refuse to give up and hope there are people on here who have had positive results.

Thanks in advance,
Andrew
Title: Re: New to this forum
Post by: melting on November 09, 2019, 07:13:19 PM
Totally possible that there's a rather fluid situation in your tissue that might change depending on the situation like hardness, bloodflow and position.
Clearly go for more Xiaflex if it helped you in the first place.

QuoteCan a plaque at the top/left of the base also be causing my left curvature 3 inches from the glans to???
Makes logically no sense. The plaque in most cases acts like a fulcrum with the biggest bend where the plaque sits. 
But who knows how a plaque at the base could influence the tissue "downstream"...

You saying that point hurting and not seen on the doppler indicates that this is a not so much calcified plaque and still inflamed.
Avoid any actions that inflames it further. As the xiaflex mostly acts on the calcification one has to think if it's useful to target that plaque right now especially when it's inflamed and an injection directly into it could inflame it more.

(I would work on that inflammation with a topical/transdermal but that's DIY and not many docs are OK with it)
Any remaining curve you might work with modeling/extending "against the curve"(so at the mid point you apply a fulcrum to counter it), Restorex might be capable of that. (Which takes time, don't create new injuries)

Great that your GF is with you and that should enable you to think about abstaining from any hard mechanical pressure on hurting or inflamed tissue.
Title: Re: New to this forum
Post by: bakeratj1 on November 11, 2019, 01:20:05 AM
Thanks Melting. I appreciate your comments.