Newly diagnosed and ready to fight

[McAlister44]

Hi, everybody,

I'm 44 years old and I've just been diagnosed. About a month ago I felt like a "vein" about 1 cm below the glans, in the left side. I didn't thought much about it as I kind of expected that it would somehow disappear or heal by itself. I had been experiencing discomfort in the penis when erect days, or even weeks, before that day but, again, I had ascribed it to my foreskin being slightly irritated, something that had already happened to me in the past.

Last Sunday I decided I needed to visit an urologist and get that checked. I'm an Spanish citizen but, due to my work, I live between Spain, Romania and Ireland. As this week I was going to be in Romania, I made an appointment with an urologist at the Regina Maria hospital network in Bucharest.

On Monday, after examining my penis, Dr. B. Straza diagnosed me with Peyronie's disease. It was the first time in my life I had heard about it. He told me that, at this stage, there is almost no bending (just a bit to the left where a plaque was palpable) but that it was probable that it would get worse over time. His professional advice was to do nothing, cross the fingers and "wait and observe".

As soon as I got home I googled it and I was baffled and terribly scared. Fortunately, I came across this forum and, as I read, I became aware that this was a time critical disease. I read all your posts about therapies and realized that the "wait and observe" wasn't the best approach. I was especially encouraged by the work of Dr. Laurence Levine. I decided I would try to make an appointment with him but, as that could take months due to the waiting list, I would try to start the therapy with a local urologist so yesterday I visited another one.

Dr. R. Popescu, as well from Regina Maria hospital network, confirmed the diagnostic, stating that I was in the acute phase and finding a second plaque in the right side of my penis, again 1 cm. below the glans. Sadly, he said the hospital's approach for Peyronie's was to "wait and observe" and that he couldn't offer me any therapy in this regard.

I got home considerably frustrated and disappointed, but remembering the phrase so many times posted in this forum "if your urologist advises you to do nothing, ditch him and find another one". I was decided to start the therapy with or without an urologist and, in the meantime, try and make the appointment with Dr. Levine in Chicago.

Oddly enough, even though I am Spanish, I hadn't explored the options at my disposal in Spain so I decided to research that a bit. I immediately found two studies carried out in the University Hospital Puerta Del Hierro-Majadahonda (Madrid, Spain).

The first study proved the efficacy of the traction therapy (https://www.ncbi.nlm.nih.gov/pubmed/24261900), while the second versed about a new therapy to optimize the efficacy of Xiaflex (https://onlinelibrary.wiley.com/doi/abs/10.1111/bju.14784). I was ecstatic and surprised that there was a world-class medical team specializing in Peronie's in my country.

I tracked all the doctors involved in the first research and I was able to make an appointment with Dr. Juan Ignacio Martínez-Salamanca, who co-authored the first study and took part in the second, in Madrid this Tuesday. Guess what seems to be the therapy of choice in the acute phase for Dr. Martínez-Salamanca? The triple approach.

I will send an update immediately after the appointment. This forum has given me hope and a way forward so I've decided to make a detailed account of this journey, including pictures, in case it may help other fellow sufferers.

God bless you all.

[TDix]

Welcome!  I look forward to following your progress.  We are all here to help each other out, so don't hesitate to reach out or offer insights.  

[mr_curve]

Please keep us updated. I would love to hear what he advises you to do.  

[Bubba dawg]

If you "almost have no bending". Then you have no problem. No guarantee that it will get worse. Keep reading this forum. You will also find that some members have made themselves worse off with some treatments. I think this is why your doctor has a wait and see attitude. You have NO bend that would keep you from having sex. Treatments are for people that can't have sex or easily have sex. You're taking a chance if you are traumatizing your penis in any way--traction, injections really. Really worth it if you cant do the sex thing. Good you are going to a Peyrones specialist. You will get a better idea of what you need to do. Insurance won't even cover Xiaflex unless you have a 30% or more bend. Many guys who do not have Peyrones have a natural bend. Good luck whatever you decide to do. Keep in mind, there is not sense in going to doctors if you are not going to take their advice

[McAlister44]

Hi, Bubba,

It makes a lot of sense what you say. I agree that I will have a clearer picture once I've visited the specialist and I will be able to make an informed decision. I will read the posts you suggest. Thanks a lot and I'll get back to you all after the appointment.

[TonySa]

If one has early peyronies (even without much of a bend) early intervention is crucial to halt its progress and reverse it.  (Not xiaflex of course.). Pentox, low dose nightly PDE5i, traction and VED are all good options.  Be sure to read the survival guide: Peyronies Survival Guide - Information for New Members - Peyronies Society Forums
Be sure the specialist uses ultrasound to diagnose.

[McAlister44]

Hi, TonySa,

Based on what I've read so far here I concur. My bend at the moment is virtually non-existent but I'm very much aware, and scared, that this can change overnight. That's why I intended to start treatment asap but, after receiving vague answers and the "wait and see speech" from two urologists already, I wanted to visit a real Peyronies Disease specialist, and having an ultrasound to ascertain the extent and situation of the plaques, before trying anything by myself.

Pentox and PDE5i seem to me the proper first line treatment option, and I'm decided to start with that as soon as the urologist gives me the prescriptions. I'm reading all I can about stretching and VED devices as well. However, in this regard, I haven't made up my mind yet. As Bubba cautioned, there is also the risk of worsening the condition so I prefer to be cautious there. Fortunately, the urologist I'm visiting on Tuesday, Dr. Martínez-Salamanca, has conducted at least one study on traction as a therapy for Peyronies Disease so I guess he'll be in condition to provide me with some answers in that aspect.

Thank you so much for you advice. I'll revert to you all after the appointment.

[Pfract]

Hey McAlister44! It's not everyday we have a member from spain joining us. I am so glad that you were able to find a reputable doctor in Peyronies to help you out. It's very inportant to have proper medical support on this like you know. I hope you continue here with us sharing your story and that hopefully you are able to have a good outcome on your condition treatment.

If you want, there is a secure way to send restorex to europe. A couple of members already did so. Buying a medical grade VED should be no problem for you too.

As for bubba dawg, check the status right under his nickname. His information is not to be trusted.

[McAlister44]

Thanks a lot for your warm welcome, pfract.

I visited the urologist yesterday. Both he and another doctor felt my plaque. They were surprised at how big it was. It is positioned around 1 cm below the glans, in the bottom side of the penis, forming what seems to be a bottleneck. He told me that, given the vast amount of plaque, I almost had no deformity even though he was almost sure that I've already lost some length.

Tomorrow morning I'm scheduled for the ultrasound scanner and, immediately afterwards I have another appointment with the doctor who, with all the information, will update me about the options at my disposal.

Frankly, guys, I'm trying to be strong with this, and striving to keep a positive attitude but, after the visit yesterday, I feel really down. On the one hand, I'm really looking forward to tomorrow's appointment, on the other, I'm dreading it, scared of what they might find. I'm sure some of you may know what I'm talking about, the emotional roller-coaster.

I'll post an update tomorrow after the visit to the doctor. Thanks again for you support.

Take care & keep well.

[TonySa]

Sounds like you caught it early before deformity  so any treatment will hopefully halt progression.  Please keep us posted.

[McAlister44]

Hi, guys,

I had the ultrasound scanner done this morning. Based on it, Dr. Martinez-Salamanca confirmed the Peyronies Disease diagnosis.

TonySa was spot on in his comment. It seems that the plaque has barely started to form so Dr. Martinez-Salamanca thinks that, with early intervention, our chances to halt further damage are good.

He's already put me on Cialis (2.5 mg/day) and Penthox (400 mg. twice a day). I have a new appointment on the 16th when he wants to carry out a further ultrasound (this time provoking an erection as today's was performed on my flaccid penis) and he will explain to me how to best use the stretcher, which he said I'll be using 8 hours a day for the next 18 months. Regarding this device, he said that he didn't really mind which one I chose, so long it provided the optimal traction required for Peyronies Disease, but he also said when I asked that the Restorex is providing really encouraging results with less time of use. So I'll try to get one those shipped to Spain asap.

I will keep you all posted on my evolution and appointments with the doctors which I will be probably visiting every month for check ups.

For all of you guys who are struggling to find a good doctor in Europe, this is a real Peyronie's specialist. He just works on Peyronies and Prostate Cancer cases and he is up to date with the latest developments and techniques. In his clinic there are several more doctors who have taken part in the several studies that the Hospital Universitario Puerta Del Hierro-Majadahonda has carried out on Peyronies Disease, most of which are posted in the documentation section of this forum. I tell you this because traveling to Madrid (Spain) from Europe is really cheap and here you will find a real pro with a whole team to help you. If anybody needs the contact details of his clinic, please, send me a PM.

Last but not least, I wanted to thank everybody in this forum for the help, the time and the effort they've put on reaching out to us all fellow sufferers. If it hadn't been for this forum, I would have stayed at home "waiting and seeing" and not putting out a good fight, as I will do from now on.

God bless you all and...

...Happy 4th of July for all of you guys from the USA!!!!!!!!

[Stabler]

Hello McAlister44,

This sounds like good news and thank you for sharing this doctors information with the forum. Make sure to keep us updated on your progress.

Stabler

[McAlister44]

Hi, Stabler,

Yes, they were better news than I expected but, then again, the fight has just started. I'll keep you all posted on my progress. If you see fit to post my doctors' contact details in the "Doctors" section of the forum, just let me know and I'll send them to you.

Take care & keep well.

Happy 4th Of July!!!!!!!

[JCH]

I look forward to following your story. We are all in this thing together.  

[Pfract]

Woah! Excellent that you are having such great support from this doctor. Back when i was in Portugal i tried searching for reputable doctors to go, even internationally. Given my Canadian background, i ended coming to Canada, and then i went to the US to see Dr. Irwin Goldstein. I am going to start recommending him to European folks if they show up again.

I was very impressed he knew about restorex and discussed it with you. There are already a couple of members here with one. Myself included. One more onboard is very cool. The more data we have so we can compare the efficacy of this device. Please tell me if the link is not working for you.

[McAlister44]

Hi, pfract,

Thanks a million for the link. I´ll order it first thing tomorrow morning. Hopefully I´ll have it here in some days. Really looking forward to start stretching. I´ll keep you all updated on my Restorex experience...

I've started today with Cialis and Pentox. Let´s see how my body adjusts to the treatment.

Yes, the doctor is really nice. I feel that I'm in the best hands now. Fortunately, and thanks to you all guys, I didn't trust the first two doctors I visited. I feel I'm on the right track now.

Take care & keep well, pfract. And should you need anything from Spain, do not hesitate to contact me.

[james1947]

As an introductory, this topic is locked.
Please continue the conversation on the adequate boards.
James