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WhatNext81

After reading to the point of confusion I've decided to sign up. About a year and a half ago I noticed about a 10 degree bend just below the head of my penis, on the right side, causing it to curve to the right. I don't recall any pain. I saw a specialist in my area and he said try vitamin E and give it a year. Well, that didn't sit well with me. I was then referred to another specialist and he simply said he didn't have much of any experience with Peyronie's. He referred me to what he claimed was the best urologist that he knew. I saw him and he wasn't too concerned as the curvature was minimal. He suggested that I order one of the VED pumps. It seemed to go away without much use of the pump. No discomfort or pain with sex or masturbation. Fast forward to Feb 2017. I woke up and noticed a significant bend on the same side. However, the bend was 30 degrees to the right and the bend/indentation was closer to the bottom of the shaft-closer to my body if that makes sense? I had some twisting going on along the underneath of the shaft. I have the hour-glassing going on as well. I've lost quite a bit of length. I also had pain with erections and while flaccid. I got back into the specialist ASAP. About a month waiting period. He prescribed Meloxicam and Pentoxifylline. This helped with the pain and calmed everything down. I had a bad reaction to the meds. I felt sick and dizzy but I took them for almost 10 weeks. I got back in to see the specialist and he said I'd be a perfect candidate for Xiaflex injections. However, I wasn't able to start the injections for two reasons, one being insurance. During that time I reached out to some friends who are into natural remedies. They suggested Castor Oil packs. I did that and it seemed to make a difference with the underside of my shaft. The twisting had reduced greatly. I tried applying heat as well.

I got back into the specialist and we decided it was time to start the Xiaflex injections. He still agreed it was the best route to go. I asked if he had much experience with injections and he kind of avoided the question and said something to the effect of how he'd done plenty of major surgeries and for me not to worry. That didn't sit well with me. But, I left and he said someone would be in touch with me to set things up. I get a call two days later saying insurance messed things up. The assistant then said that surgery would be the best route. Now, the only mention of surgery from before was to put two stitches on the opposite side to straighten it. No mentioning of de-gloving. I asked about the loss of length. I was informed that Xiaflex and the aforementioned surgery had the same outcome. Neither would give me any length back. I understand how the surgery would result in no chance of regaining any length for obvious reasons. A few visits back I was told Xiflex wouldn't break up the plaque but it would make it more "elastic" and by stretching(hand-modeling) it should reduce the degree of the bend and get some length back.

Now, My main concerns are they've told me differing opinions on outcomes. Also, he went from agreeing on injections to surgery? On top of everything, if I go the injection route, I've never had an ultrasound or any type of imaging done. I'm concerned about that as the hour glassing and curvature is so close to the base of my penis. When I get an erection I feel a great deal of stiffness just below the shaft and before my scrotum.  I asked about an ultrasound and he said an artificial erection is all he'd need to figure out where to inject Xiflex. That is if he is willing to do the injections. I'm pretty down about the whole situation. I've called around and I haven't found a urologist that deals with Peyronie's. My current specialist is a 3 hour round trip and I'm having doubts. I'm young, single and frustrated.  
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Hourglass69

Get a new dr run for the hills no surgery. The injections have to be done just right or it can be bad.  

WhatNext81

This urologist is supposed to be the best in my state. But, I think it's obvious that when it comes to Peyronie's we're talking something different. I called the manufacturer to see if they could offer any advice for my search. They said there was a search on their website. Nothing came up in my state. So, any suggestions? Also, this is very expensive, I have no clue how insurance in a different state would work. On top of that, it's a series on injections twice a week? Any suggestions on how people do this or fit this into their schedule? Does anyone have any experience with the Mayo Clinic in Minnesota?    
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Hourglass69

My dr has patients flying from South America and Russia every two weeks just to be treated. I am blessed that I only have to drive two hours to see him get treated and drive two hours home. For the next 9 months of injections.  

WhatNext81

You sound very fortunate. I need to figure something out.  
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WhatNext81

I have been in contact with the Mayo Clinic. The receptionist explained the consultation process and that alone is a huge relief in comparison to what I've experienced so far. A physical exam and and an ultrasound with an artificial erection will be done in one visit! This person was very polite, understanding of my situation and very informative. Next step is speaking with my insurance and figuring out the details. I'm optimistic at this point. As mentally taxing as this journey has been, driving out of state for good treatment is something I look forward to. I can't wait to get my appointment scheduled and will likely be counting down the days on my calander.

I spoke with my current treating drs office and inquired about a VED  as I was told getting into the Mayo Clinic can take 30-60 days. I was told that since my peyronie's is stabilized it's not a good idea as it can do more harm at this stage. The logic is my plaque isn't elastic enough and more damage could result from using the devise at this point.

Thanks to all contributing members here. I probably wouldn't have looked into other options if I hadn't combed through all of these threads. I will stay active on here and offer anything I can contribute and look forward to sharing what lays ahead of me. Hopefully I can offer something helpful to pay it forward.  
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