i was 22 when this started

[23Male]

 

I am Now 23 and have diagnosed Peyronies. Unfortunately I live in the UK and our Nationalized Health service is very poor in comparison to the US health service (god bless the free* (*ish) market eh?) thus after 3 months of obvious symptoms from the summer of 2014 onwards I got a diagnosis of "yeah its Peryonies, but we cant do anything, come back in January 2016 and we can look into "solving" the problem, the "solution" was of course the Nesbit procedure where they mutilate your penis to be straight and pretend the underlying issue (scar tissue formation) has magically gone away. I immediately said I would not have such a procedure until sex was impossible by curvature. I am also away that from 2015 onwards verapamil is approved for EU use, and there have been many other ways in which to treat this issue. Non of these have been suggested, nor did any doctor or "specialist" seem to know how to treat this. I have not even been given a scan once, simply been poked at; for all I know there could be underlying damage that is not healing properly. It has been an extremely poor experience and Doctors in the UK do not seem to have any idea what they are doing.

Do you have any ideas for treatment I could so, even over the counter? I take Vit E, and two other pills which help blood flow to the penis. And rub bio oil in daily.

My symptoms are, left leaning, bottlenecking near the top,  increase in curvature, but the worst part is; 24/7 pain sometimes radiating all down my leg and I take painkillers everyday.

I do not suffer ED (Yet) sex is possible but I feel in pain afterwards, I exercise most days.

I feel totally abandoned.  Thanks for any comments.  

[james1947]

23Male

I will start from writing that you are not the only one that encountered those kind of doctors.
The worst think to do is to "wait and see" because you will not like what you will see for sure.
Vitamin E will not make you any damage (probably) but will not help with Peyronies.
What are the two other pills you are taking?
Regarding Verapamil we have a board dedicated to:
Verapamil - Injections & Topical Applications including Iontophoresis - PDS - Peyronies Society Forums
Read to see how Verapamil helped others with Peyronies (or not helped or got worst).
Many forum members reported recession of the pain using Pentox, but it is a prescription drug.
Some members got pain relive using CoQ10 or Ubiquinol. In your age CoQ10 may help you.
Rubbing bio oil daily may be pleasurable, I don't think will help with Peyronies.
VED may help you also.
Last for now, Nesbit have many not successful stories beside the successful ones.
Proposing you, if you can afford financially, see Dr. Kuehass. He is in London.

I understand your feeling of being abandoned, but you have to take the subject in your hand and fight this disease. And you are not abandoned. We are brothers in arms and here to help each other. Some of us in any case

James

[23Male]

23Male

I will s take the subject in your hand and fight this disease. And you are not abandoned. We are brothers in arms and here to help each other. Some of us in any case

James

Thankyou for the post friend.  

[owenhall76]

Hi, sounds like you have received the same NHS advice I did, Operation or go away. I am 15 months down the line and I feel abandoned by the medical profession. It is depressing and I hope you can get some sort of help, have you tried asking for a consultation at another hospital. I was thinking of doing this. I was offered at the outset 3 different hospitals to visit, I picked a private hospital in Stafford, he said Nesbit but someone else my just offer a different path.
Good luck.
Owen

[J-A]

I too went to an NHS urologist. This was a complete waste of my time and his. I was told to wait ( idiot) and then if sex got impossible the Nesbit procedure ( not on your nelly ). I subsequently scoured the net and found the London andrology clinic and made an appt. I then found this forum and phew others like me. And better others who had had operations by Dr Keuhhas. I am now 7 weeks post op and back to business so to speak. PM me by all means if I can help in any way  

[owenhall76]

Heh that's great the chap has been straightened out. I am new to this Forum so in catch up mode. What procedure does Dr Keuhhas perform if not the Nesbit. I too don't fancy this procedure but will I ever have SI again.
Owen

[james1947]

owenhall76

Why not to make a google search for Dr. Kuehass and to read about his techniques (basically Guido technique) from the source and not second, third, fourth hand?

James

[23Male]

I too went to an NHS urologist. This was a complete waste of my time and his. I was told to wait ( idiot) and then if sex got impossible the Nesbit procedure ( not on your nelly ). I subsequently scoured the net and found the London andrology clinic and made an appt. I then found this forum and phew others like me. And better others who had had operations by Dr Keuhhas.

Thanks for all the responses guys.

What is the price for this sort of treatment?

[Jeroen]

Hello 23Male. Sorry to meet you this way. I had about the same experience with doctors. They just don't care.  

[TheE]

I'd recommend Acetyl-L-Carnitine with Alpha-Lipoic-Acid, CoQ10 and L-Arginine. Take it easy though because it's a lot of antioxidants when I have too much it feels uncomfortable. Perhaps look into VED and/or traction but also take care because it could aggravate things. This is what I'm doing but I'd like to find something antifibrotic as well, good luck.