52 Year Old Joins - Does Anyone Have Symptoms Similar To Mine?

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WorldsMostInterestingMan

I'm joining hoping to gain knowledge that could help me to improve my condition or at least know what all my legitimate options are and if I am doing the right thing.

When I read about Peyronie's, it seems to typically address "bending". That is not my problem. My chief problems are a shortening, pain during erection, and during erection the portion closer to my body is stiffer and harder while the portion from the mid section towards the head is narrower. It almost seems like blood gets trapped in the half closer towards the body during an erection and it hurts (on the top side). My overall penis length has shortened at least one inch and possibly more. I find myself frequently having to pull the head out of the foreskin as it seems to retract too far and the foreskin covers the entire head, which is not normal for me as I have been circumcised and before this disease the foreskin did not cover the head up, even in a relaxed state.

The first symptom I noticed was in the fall of 2009 and it was that my penis seemed to be retracting more than normal in a relaxed state and pulling on the foreskin. It seemed to do it worse when outside in extreme cold or when outside mowing the lawn in warmer weather. It worried me, but I did not know what to do and sometimes wondered if I was just imagining things or worrying about nothing.

In June of 2011 I felt a small, hard knot in the center of my penis lengthwise and cross-sectionly. I self-diagnosed that I had a small kidney stone stuck in my urinary track. I went to a urologist in July 2011 and he ran a tube up my urinary track and determined it was not a kidney stone. He diagnosed me with Peyronie's Disease, which I had never heard of. At that point in time, I don't really remember pain, I just remember the hard knot and the feeling as if there were a stone inside me that could cut me if squeezes too hard.

The urologist put me on a treatment for 1 year of Veraparnil 15%, which is an ointment that I put on twice a day. I have been using it for about 9 months now, and have not had any harmful side effects. It is expensive. It is suppose to help dissolve the scar tissue as new tissue grows back.

The original hard lump is gone, but my condition is worse than 9 months ago. My penis now seems to be shorter all the time, relaxed or erect. I can't have an erection without pain, yet I still have the desire to have erections and still have them. It is weird to experience extreme pain and pleasure at the same time, and it is extremely frustrating and disheartening. It is like the outside of the penis feels good and the inside hurts.

It seems like the tissue inside is a little stiffer. For a while I started wearing looser underwear as it was uncomfortable for it to be bent. It felt like there was a tiny bone inside that would break. Rolling over in bed at night I now notice myself being careful about bending it the wring way as it feels like it might break something.

When I have an erection, the pain is in the center and is more dispersed than the location of the original knot. I've also noticed pain near the surface on the top side on the half closer to my body. This part bulges during an erection, seemingly like there is excess blood there that is trapped and can't get through to the rest of the penis.

Used to sex was something I wanted to have as much as possible. Now, it happens about once a month. Afterwards, I am sort of sore and tender foe a few hours to a day. It seems more difficult to penetrate and with it being shorter, I feel like I am always going to pull out accidentally.

I went for a followup exam in December 2011, and the urologist seemed happy that the original knot had dissolved. He said he could extend the prescription longer than a year if we needed to at the end of a year.

I intend to go ahead and finish out the remaining quarter year of this treatment, but I constantly wonder if anything would be any different if I weren't even using this medicine. You would think they would drop the price of this medicine until they proved that it really works. The literature on the medicine said that pain usually improves in the first month or two. In my case, this did not happen and pain got substantially worse.

I keep looking for reasons or causes for this disease. One thing really stands out in my case, but could just be a circumstance. For 30 years I did not drink alcohol at all. In the fall of 2009, I started drinking often with dinner, especially Margaretta's. This is the same time the first symptoms started.

Also, there were two other strange changes in my health in 2009 and 2010. I feel strongly that somehow all of these are related to the Peyronnie's Disease.

I came down with mono in November 2010. The odd thing is that I had mono 30 years prior, and yes, it was diagnosed both times as mono using multiple tests. It is rare to get mono a second time. It is rare to get Peyronie's. It would be rarer even still to get both at the same time.

The other physical change is even more confusing. In 2009 I started noticing what felt like a "tugging" or a "pulling" in my lower left side when I lay on my back. It is in the area of my large intestines (the descending large intestine). When I had the mono, I used to feel a sort of burning sensation in my left side slightly above this area, but that went away after a few months. I talked to my doctor about this and he had me get a colonoscopy in January of 2011. They removed a couple of polyps that were noncancerous, and found nothing else. I still feel this tugging or pulling in my left side when laying on my back or leaning on my left side.

The doc also did a sonogram on me and said I had one small gallstone, but surgery was not necessary unless I started experiencing pain. He said most people eventually do develop a gallstone and most never know it. In the fall of 2009, I had an experience that I now suspect was a gall bladder attack, but it improved by itself after a few painful, sickening hours.

Does any of this sound familiar or similar to any symptoms any of you may have experienced? Are there any medical professionals that could point me in the right direction.

Luciano

Well it is hard to answer because all the things you have can be, but are probably not related.
2 main things. Yes it seems that your uros diagnosis was correct. Shortening and pain is a symptom of  Peyronies Disease.
But I personally do not think that the medication (verapamil 15% ointment) is correct. It will do you no harm, but most here have not seen any positive effects.

While you are here, do some reading on the board. That will help.

What you should always do, is get a second opinion, by another uro.
If using ultrasound he can see if you really have Peyronies Disease.

If the diagnose is correct, it would be possible that you have a diffuse plaque, so called hourglass effect.
It does not meen that you have to have a curvature.

I were you I would first of all do a lot of reading on these forums.
Then I would start to do something, on one side, start oral treatments (pentox, ubiquinol, etc.. you will find a lot in the oral treatment section)
Then, as shortening is a matter, I would start with a VED therapy. (Or traction. You will find a lot about that in the according sections of the forum) Some say VED is better, some say traction is. some do both. There are few studies, but all say results are positive. In any case, follow the protocols and do not overdo it.

At the same time, as I said, get a second opinion. Find a uro that is specialized in Peyronies Disease in your region.

Thats all for the start from me...
But it should keep you busy.

Luc




james1947

First welcome to the forum. I know you was preferred not to be here, but if you are already here, welcome.

Second I would like to reinforce all what Luciano is saying so I will not repeat that, except that is very important indeeds to read the forum posts to be able to decide what you see personally as the optimum treatment for you.

What I would advise you is to get on Pentox and VED as soon as possible.
Pentox helped many in reducing pain and softening scar tissues.
VED is important to keep blood flow to the penis and myself gained back 1/2" in the first three month of usage. Very important to be carefull with VED and not to overpump it and make additional damage.

James


Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

jackp

I just want to enforce one thing. Get on the VED exercise ASAP. It will help restore your penile size over the next several months. The other thing it will help keep your penis healthy.

Be aware that a general practice urologist are not what you need. You need a Male Sexual Function / Urodynamic Specialist. These doctors are had hard to find, most large cities don't have one, so be prepared to travel. There are very few that are great with peyronies.

This is a great place for questions and answers. Don't hesitate to ask.

Jackp
http://jackp-penileimplant.blogspot.com/  

Ralf3

When I noticed the first symptoms of fibrosis, I was suffering from mono as well. I was 21 that time. My immune system was totally weakened and my sugar levels were elevated as well as liver enzymes leves. And I was treated with strong antibiotics. In my case there was definitely a connection between mono and penile fibrosis.

WorldsMostInterestingMan

Update: It is January 9, 2013. I have been using the Veraparnil 15% Since August of 2010. The hard not in the center has dissolved and is gone, but the core of half the penis closest to the my abdomen seems to be stiffer or "calcified" to a degree. The pain went away for the most part by the 11th month, but it got a lot worse before it got better. It seemed for a while every day it would look a little different. It now seems to be consistent but it is still much shorter. It is one to two inches shorter than before the disease started. If I could just get rid of the stiffness and get some or most of the length back, I would be happy. I am able to have sex, but is more of a challenge now as the shorter length pulls out too easily. It also is uncomfortable and just feels weird when it "retracts" too far and pulls back on the foreskin.

People have recommended a VED. Where do I get a VED? Do I talk to my urologist about this?  

Norm

There are some common things about Peyronies Disease. One is that something almost always sets it off. It may be an injury, it may be some other fibrotic condition, it may be blood sugar, and you may never know what it was. The end result is the same though, you have it. Another is, it is very diverse in how it presents. Some of us have curves, some have hinge, some have hourglass. It goes on and on. The commonality is that it is different for every one. From this forum you will learn that there are some treatment approaches that are verified to show improvement. What seems to work best is a combined therapy of chemicals( ie, Pentox, ACL, CoQ10, Cialis) and physical manipulation (VED or traction). I cannot speak to traction, but a good place for a VED is www.diabetessupplies4less.com. They sell the Vitality unit either manual or battery for under $150 with no prescription on the manual and about $230 on the battery. I think VED would help your shortening. It did mine.  
Plication Surgery Dec. 2013. Straight Again!