New Member

[Nordicz]

Hello,

Like everyone on this forum I've been Diagnosed with Peyronies Disease. I first noticed a painful erection 18 months ago and a slight curvature. The painful erection did not leave and after 4 months I discussed this with my normal doctor who confirmed the onset of Peyronies. He recommended the various over the counter supplements such as Vitamin E and that this would need to run it's course. For about the next 8 months the plaques continued to grow as did my curvature. I got over the stigma of the curvature and continued to be able to have intercourse with my wife. Not as often for us due to a large degree of discomfort on my part. Such as sensitivity to the shaft where the plaques were present and the curvature slightly interfered during intercourse straining the penis. I have no difficulties with attaining or maintaining an erection so No ED. About 6 months ago the curvature took a drastic change in bend. It is a dorsal curvature that went from about 30 degrees to 65 degrees in a short period of time. The plaques did not progress but the curvature did. Due to the drastic change intercourse is not possible between my wife an myself. I have since visited my doctor again who has referred me to Dr. Landon Trost of the Mayo Clinic. In my opinion he seems like a great doctor who specializes in the disease. I have had the ultrasound done and have discussed treatment options. I do have a slight hourglass deformity also. So the treatment options are limited.

Z

[james1947]

Nordicz

You have mentioned the doctor in other post also as:

Great doctor who specializes in the disease

What is the treatment he started with you?

James  

[Nordicz]

James,

You are correct I have mentioned him twice. After being on the forum for a while today. I realize that may be rather presumptuous on my behalf. I have done research on him and his works on this subject matter. Having consulted with him I have been left with a very positive and confident impression. Many members here may have had similar early experiences. I suspect it would be better for me to add that it is my opinion versus sounding like a factual statement. My apologies.

Due to not seeing him till 18 months or so since I first noticed the changes these were my recommended treatment options.

1. Purchase and use a traction Device his recommendation was Andropenis

Option 1: was to begin Xiaflex injections-  2 injections in a week wait six weeks and repeat 4 times.
He stated that typical results in his studies where on average 17 degrees of change.
Cost of treatment was expensive approximately $50,000 for the drug alone.
No guarantee that surgery would not have to be performed following treatment.

Option 2: is Surgery due to the curvature and hour glass deformity the Graft option was discussed.
The plaque is well defined and calcified. The ultrasound shows very good blood flow with no current leakage.

As of today I have not committed to either treatment. I feel there are risks to each option and am trying to way them without Bias.

Z

[james1947]

Nordicz

Don't needs apology on mentioning the doctor twice. I mean that he impressed you so I asked about the treatment he had proposed to you. I am judging a doctor according to the treatments he gives.
I didn't see you mentioned any oral treatment so I am somehow disappointed.
I was expecting him to start with oral treatment first, injections second and surgery third.
Just my opinion.

James

[Nordicz]

James,

I can understand your thoughts around the lack of oral recommendations.  It came up in discussion but he felt due to the severity of the curvature, hourglass effect and the duration of the disease that he was not confident in acceptable results to me. I do not want anyone to be left with the wrong impression. He seems to have a conservative nature and approach. He did not push surgery as the best option. But just that an option. He would prefer to try the injections and traction option first, observe the results then re-assess. I on the other hand am torn with that choice- yes it is not surgery. Yet it is not a easy road to travel, expensive and unpredictable results. My mistake on this in my opinion was not asking for the referral when first diagnosed. It was offered but the physician's advice was consistent with anything I had seen related to the subject at that point.

Z

[james1947]

At mean time, I read on the forum that he prescribes oral treatment so what you say is logic.

treatments-pentox, l citrulline, cialis, xiaflex, interferon, traction, all surgery

Myself, started treatment 3 years after the Peyronies started, two calcified plaques and 3 hourglasses.
With VED and oral treatment the 3 hourglasses gone, my plaques softened, I got back 1.5 cm length and some girth lost to Peyronies.

James

[Nordicz]

James1947,

I am very encouraged by your positive results. If you don't mind me asking. Did you have a large curvature such as greater than 40 degrees, and if so has your treatments been able to decrease curvature?

Z

[james1947]

Nordicz

In my worst time, more than 2 years ago, I had sharp left bent to the left close to the base, slight curve to the right following the hourglasses and again left following a left close to glans hourglass.
In addition, an upward banana that made penetration impossible in certain positions.
I never measured the angles so I can't tell you what it was compared to what it is by exact angles.
What I can say the hourglasses disappeared and with them the curves.
Remain the sharp left bent close to the base but less actuated and the banana up curve, less also.
Bottom line, penetration is possible in any position.
Still ED problems, the shortening remain 5 cm, girth lost still there, let say I am on the 60% girth compared to before Peyronies.
The improvements significant, but still long way to be back where I was before Peyronies.

James

[Norm]

Nordic,
I also have overcome this malady, but I chose surgery. I had in excess of 80 degrees curve.  After three years using the traditional methods to no avail, I chose plication. I am not telling you this to discourage using the mainstream methods. I am telling you so you will know that there is an answer for everyone. I encourage you to try Pentox and VED. But if all else fails, there is is still surgery. This is not a hopeless cause. There is a treatment out there to help you. You just have to devote the time to find it.
Norm

[Nordicz]

Thanks Norm,

I appreciate your encouragement. I wish I had found the forum when first diagnosed it would have answered some questions and concerns. The forum and it's members posts have enlightened me greatly. I know my duration is not as long as many others but I have learned to adapt, process and accept the dilemma. It is reassuring that you are not along in the plight. I have spent the last couple of days exploring my options. I have good advice from both my wife a Nurse Practitioner and my best friend a Medical doctor to help me process my consultation with Dr. Trost.

The information on the forum has been very helpful in me process my experiences and relate to others. I do not want to be rash in my decision but also want to break down the benefit and deficits of each recommended intervention. Each choice has merit and each choice has risk. My choice will have to be determined by what I am willing to live with.

I don't have reservations about a curvature or deformity. I have a loving wife who doesn't dwell on those things as do I. But and this a BIG BUT we cannot currently have intercourse and that is a problem for me more than her. I also have no problem with using supplements for vitality but would prefer not to have to go down that road if possible.

Z
 

[Nordicz]

James 1947,

With my condition I have lost length due to the curvature. Not so much due to hour glass. I have no expectations of gaining that back and by comparison I was at average length at best. I want to enjoy intercourse with my wife and please her ultimately.

Z

[james1947]

Nordicz

I would say that is possible and have good chances to gain back length and girth lost, especially if treated early.

As an introductory, this topic is locked.
Please continue with specific subjects on the adequate boards for better knowledge accumulation.

James