penile fibrosis

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HARA

Hi Guys. I don't have Peyronies but instead i have penile fibrosis but there is not a forum dedicated to that

It happened following an appendix operation. They damaged nerves and that caused my penis to shrink up really tight for a long time with a huge amount of inflammation going on in my abdominal area my penis really did not stand a chance. I tried to get help but was just disregarded as being stressed and by the time it un-shrunk it was too late. all the tissue in my penis had changed.  

The pain got so bad it was like someone had taken a mallet and repeatedly smashed the tip of my penis. It eventually drove me a little crazy and i found myself in and out of a psychiatric ward for 3 years.  I finally managed to sort out the nerve damage with the use of a magnetic pulser. Since then i have tried to cope with it but i am uncomfortable all the time. My penis gets really constricted and tight and when it does sometimes inflate a little it just feels like rubber with no real structure to it.

I have just gone and had a PRP injection as its finally come to the UK. The DR that did it is confident that it will help. He said it could take quite a long time though and require multiple injections. At £1000 a go its very expensive.  

The operation happened back in 2004 and since 2009 i have really been trying to get on with my life and ignore it. In that time i managed to have a relationship and could sexually function when taking huge amounts of supplements and the fact she was insanely hot got my heart racing and blood pumping but the erections despite being full did not at all feel like my old ones. I lost full erections very easily but it would then ark down and take a really long time for the blood to flow out.

At the age of 30 i have found myself back living with my parents, i have kind of given up doing anything as everything i do feels wrong not feeling my penis as it should be. Its so distracting kind of like fantom limb my brain is constantly telling me it should feel like it did and i just can't except how it now feels.

I have given myself a year to see how the PRP and somapulse go and after that time if nothing happens to improve it i may have to look at getting fat injected into it to give it some structure. Obviously that is not what i want to do as it will wreck any future chances of regenerative medicine but i can't do nothing for the rest of my life as my penis is uncomfortable.

I have never found anyone that can relate to what i am experiencing and i feel very alone    

james1947

HARA

QuoteI don't have Peyronies but instead i have penile fibrosis
I would like to challenge your sentence. I am not a doctor, but one of the main Peyronies symptoms is a plaques, a fibrosis tissue.
The other symptoms you are mentioning also are Peyronies related.
I am proposing you to read much as you can on the forum, start from:
Peyronies Survival Guide - Information for New Members - Peyronies Society Forums
By the way, we have topics on PRP here:
Developmental Drugs & Treatments - PDS - Peyronies Society Forums
It will help other members if you will post from time to time your progression with PRP.
I am also proposing you to see a Peyronies specialist and make a Doppler ultrasound to your fibrotic tissue.
I added your name to the list of the forum members that are getting PRP.

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

Thisismyusername

Have you looked into hard flaccid and chronic pelvic pain syndrome?  What you are describing sounds potentially related to pelvic muscle tension.  I have hard flaccid and my urologist mistook it for fibrosis.  

NeoV

I second James in that Peyronie's essentially IS penile fibrosis, and therefore should be treated the same. Read the survival guide to get a basic understanding of the treatments. Pentox, low dose cialis, CoQ10, acetyl-L-carnitine, VED therapy and traction.

Fibrosis may be the result of "hard flaccid" or CPPS if such a thing exists. As much as I agree that pelvic pain syndrome is linked to fibrosis, I'm unaware of how to go about treating it anyhow. Treatment options for pelvic pain syndrome as well as causes are all across the board. It's worth looking into however. My penile function has slowly returned after stopping all pelvic clenching and lessening sexual activity. All these things certainly need to be considered.

Moving on to the main part of your message, I have immense sympathy for you, as I'm sure everyone else here does too. The concept of a phantom limb, a constant sensation of something "lost", I can relate to all too well. Now that my symptoms are mostly gone, to be honest I have discovered that my anxiety and obsession remain. I realize I feel abnormal constantly. On the rare occasion I do see glimpses of normalcy and self acceptance, it's mind blowing. As in, "wait so people actually feel like this?". My advice is to treat the two issues somewhat separately. Treat your fibrosis with everything you can and treat the mental aspect autonomously. Feeling deformed sexually is possibly the most painful and self negating thing a living organism can endure, but it's these emotional depths that allow us to see things often times otherwise hidden, for the vast majority of men, all their lives.The things closest to death bring us closest to life. Do not give up.

-Neo

skunkworks

Hara - Added to what James said (which I 100% agree with) it is the same treatments for penile fibrosis as Peyronie's.
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]