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Welcome to J Francois Eid, MD - Directly answering member questions in the "Medical Professionals" section below the Treatment boards.
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Author Topic: I'm just thrilled to be posting here!  (Read 4669 times)

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bert

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I'm just thrilled to be posting here!
« on: November 18, 2011, 10:29:51 AM »

Ok obviously that isn't the case. I have been checking this forum for the past few months now, and I don't know why, but decided to join today. A little about me and my situation -

31 years old, ended a 4 year relationship with a girl I lived with, moved out end of March this year. I noticed a lump in shaft while emptying out after urinating sometime around May 1 this year. Didn't think much of it, googled "lump in penile shaft" and saw that it was peyronie's disease, read a few articles, read that in most cases it doesn't give men any real problems, oh well, not ideal but I can handle it.

I didn't have any pain, no curvature, deformity, etc, and went about my life, met a couple girls over the next few months, had sex here and there, then after a week long marathon sex session that ended abrubtly and my penis pain kicked into gear, I set up an appt with my urologist (I had a bout of prostatitis last year and was seen by a uro in the area) and in the week or so I was waiting for my appointment, I began to obsess about this condition and had a severe panic attack. I remember it clearly, I was reading the Wiki article and came to the part that read something to the effect of "there is no effective treatment, Peyronies Disease is emotionally devastating, etc..." and remember thinking "I can't live like this" and having no control over my thoughts. That was scary as hell and began a period of a few months of the most severe depression I have ever experienced. Looking back I actually consider myself somewhat lucky I made it through it.

Anyway, I'll make the rest of this long story short. Doc didn't seem to know a whole lot about the condition and consulted with another doc in the office who also didn't seem to know much, but prescribed Trental (which I know is referred to as Pentox on this site). That was July 25. I am also taking Cialis 5 mg every other day, L-arginine, Vit E, D. August 12 I noticed a new lump above the original lump, this grew and gave me pain that pretty much subsided by the middle of October and I thought I was on the road to stabilization, until a few days ago, the irritation started again and I noticed a new lump just below the original lump. I guess it was when I discovered this that I decided to register with this forum. I have periods of despair and periods where I am able to be somewhat positive, but overall I am dealing with the newest lump better than I dealt with the first 2.

Soooo, to summarize, the original lump, disovered around May 1 is now smaller and has smoothed out somewhat, the second lump - above (toward the tip) the original lump is now also somewhat smaller and less inflamed, and just when I thought I was stabilizing, the newest lump below the original lump formed, doesn't hurt too bad at this point, just frustrates the hell out of me. Ok, I am totally rambling here, just wanted to get this out there. I plan to post in the forum a lot as I have tons of questions for you guys. In the meantime, any input from you vets is greatly appreciated.
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Saint Hubbins
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GS

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Re: I'm just thrilled to be posting here!
« Reply #1 on: November 18, 2011, 11:34:04 AM »

Whenever I read a post from someone that just got Peyronies and read about how depressed and scared they are, I think about how scared and depressed I was when I first got this SOB disease.

Now, 3 years later, I've learned to not only live with it, but live well and still enjoy a great sex life.  Granted, it's not the same as pre-Peyronies, but I'm still functioning.

One of my main concerns at the beginning was "how bad will the curvature get and will the pain with erections ever stop"?  My urologist didn't have any answers and really was no help.  I consider myself very fortunate in that the curvature actually got a little better and the pain with erections doesn't exist anymore.  I honestly feel the information I learned on this forum was the difference for me.

So, my advice is to learn as much as you can here, get all the supplements, get a VED and have a positive attitude toward the future.  Peyronies doesn't have to be the end of your sex life.

GS
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bert

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Re: I'm just thrilled to be posting here!
« Reply #2 on: November 18, 2011, 11:53:21 AM »

thanks G, and yes, the scariest thing is just the not knowing where and when it will stop. I would be A-O-K if it stopped where it is now and the pain went away. I don't have too much pain during erection, it's in the flaccid state and until a month or so ago, it was present all the time. The most frustrating - and I mean at times enraging to the point I want to break s#!t - thing is having periods of little to no pain only to experience a setback and question if I am making any progress toward stabilization at all.

There was a time in the beginning of September that lasted for a few days where the pain was virtually zero and the lumps had shrunken down to the point where I couldn't locate them when I urinated in the morning. I was elated and began to mentally move on from this condition for the first time in months. Later that week I tried to throw a brand new $250 frying pan through a wall.

Another thing worth noting IMO - I can't believe I'm sharing experiences involving my f'in penis with the whole wide world...whooda thunkit?
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Saint Hubbins
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Skjaldborg

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Re: I'm just thrilled to be posting here!
« Reply #3 on: November 18, 2011, 03:26:08 PM »

I got this at 29 (now 32) so I know the feeling. I would describe my emotional condition when first diagnosed as ranging between depressed at one end of the spectrum and pure, unadulterated rage at the other. I have never had a more distinct feeling that I didn't deserve something like this, it's nearly indescribable. I'm a nice guy, married, never fooled around on the wife nor treated women poorly when I was single, so how in the hell do I deserve this? I can't tell you how many times I would wake up in the morning and hope that I had finally awakened from the terrible dream of a deformed and painful penis at age 29. I don't want to be melodramatic about it as I know people are suffering from much greater afflictions, but I genuinely felt as if I had been reborn in some terrible bizarro-world parallel universe.

Fortunately, I have a very supportive wife who went with me to all the uro appointments. I got on pentox and the pain went away in a matter of weeks and was gone in a few months. My functioning is totally normal and my 1 year old daughter was conceived while still on pentox. I used all the anger I felt to focus on exercise and taking better care of myself. I am in better fighting shape than I was before Peyronie's and certainly have gained some mental toughness. I can handle just about anything now.

Bert: you're gonna be fine. Stick with the pentox and other treatments and focus on making yourself healthy in other ways. Keep having and enjoying sex and don't worry about it too much. Most women don't even notice lumps or curvature unless you bring it up.

-Skjaldborg
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bert

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Re: I'm just thrilled to be posting here!
« Reply #4 on: November 18, 2011, 04:01:22 PM »

Thanks Skjaldborg (interesting name),
  I've seen your posts around the site and draw from your experience actually, seeing how we're about the same age and you seem to have come out the other end in decent shape. I've read several accounts on the forum of people who get pain relief from pentox relatively quickly, but I haven't really. I wonder if people are getting good results from doubling the doseage.

I would really like to keep having and enjoying sex, but I'm single at the moment. During one of my very very depressed periods, I was drinking with some friends at their house and a friend of theirs came over and long story short we ended up having unprotected sex  ??? within a few hours of meeting each other. It was at this time that I decided I really don't need to be whoring around any more, so sex was off the table for a while, but from here on out, I'll do everything I can to heed your advice  ;)

You know, of all the people I have talked with about this, my urologist, my new therapist, a friend of mine, etc, you're the only one who has told me I'm going to be fine. I can't tell you how much I've wanted to hear/read that from someone who actually knows what they're talking about. Thank you.

Anyway, thanks for commenting. I'm happy for you that you are in a good place with your condition.
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Saint Hubbins
"He was the patron saint of quality footwear."

Skjaldborg

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Re: I'm just thrilled to be posting here!
« Reply #5 on: November 18, 2011, 04:46:47 PM »

and long story short we ended up having unprotected sex

Pentox increases sperm motility and therefore fertility so for this reason as well as protection from STD's, wear a rubber! :)

-Skjaldborg
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bert

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Re: I'm just thrilled to be posting here!
« Reply #6 on: November 20, 2011, 08:47:32 PM »

Well I have come to the realization that the newest bump has caused pain to come back in full effect. I noticed the new lump Tuesday and today the pain was like I remember when the first 2 bumps were new, and I think the timeframe about matches too. My head and emotions have been all over the place today as a result.

Does anyone know of anything to do for the pain during periods of inflammation?

Typing on the iPhone so sorry for being a little scatterbrained. Thanks
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Saint Hubbins
"He was the patron saint of quality footwear."

Skjaldborg

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Re: I'm just thrilled to be posting here!
« Reply #7 on: November 20, 2011, 11:47:41 PM »

Non-steroidal anti-inflammatories like tylenol and motrin can help with the pain.

-Skjaldborg
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bert

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Re: I'm just thrilled to be posting here!
« Reply #8 on: November 21, 2011, 09:40:21 AM »

In my experience they haven't really helped with the pain.
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Saint Hubbins
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mercurza

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Re: I'm just thrilled to be posting here!
« Reply #9 on: November 21, 2011, 06:23:57 PM »

Bert,

I read your post and had to reply. I literally have almost an identical story as your's EXCEPT it took me 2 years to get on this forum for any support. I have had it all, believe it or not, had lumps grow, shrink, new ones form, disappear, move all around, pain so bad I can't sleep, no pain at all for months at a time, 15 degree curve up, 30 degree curve down, curve left, hourglassing, indents, Erectile Dysfunction, and not too mention the emotional stuff. I even had to go on Zoloft for panic attacks.

I was devastated. I got this when I was 25, I am now 28, and my Peyronie's changes daily and often still. But one day, through the help of people here, I made conscious decision that this was not going to control my life. I had started dating a girl 2 months after I got Peyronie's... I even had severe Erectile Dysfunction during our honeymoon - a guy's worst nightmare? And I kept thinking "why me?" But I could not go on like that. I decided to do all that I could in terms of therapy, every time I think or obsess about it I try and think of everything I have going for me (and also the fact that this will not kill me), and I don't let the thoughts get out of control.

I also talk about the disease openly. I know it's weird, but normalizing it can be therapeutic. I've told some of my guy friends, basically by saying, "You'll never guess what the hell has happened to me" and explaining the disease. They've been great friends and sure give me a hard time, but at the end of the day you just happen to have some extra scar tissue in your penis. That is it.

But right now, emotionally, I feel okay. I am married. I bought a house. I have a job. I have a sex life (albeit a more physically tame one). I want to have kids. I just happen to have some extra scar that makes my penis look different than it used to.

The best thing I did was to not let myself be defined by 4-5 pieces of crazy scar tissue floating around. And guess what? My peyronie's still hasn't stablized. This is not to scare you, it's to show you that in even the worst and longest cases, there is hope and life through it all.

Stay strong,

mercurza

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sgtnick

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Re: I'm just thrilled to be posting here!
« Reply #10 on: November 22, 2011, 10:31:54 PM »

Bert  -  I woke up one day, about 5 years ago, with a curvature and went straight to the internet.  I read everything I could find about Peyronies Disease and became convinced that there is really not much long-term improvement.

I tried everything that was suggested:  Pentox, vitamins and various supplements, a little voo doo, VED, etc, etc, etc.  However, I stopped short of the knife.  I was not about to let anyone whittle on my dick.  Everything I read that related to surgery offered very little help or hope.

Three years passed, I had stabilized with 2" loss in length and some loss in girth, and a 30 degree curvature. Then I decided to do something positive!  I got implanted.  I lived in a world of horrible pain for 6-8 weeks while dealing with an obnoxious and arrogant surgeon. Had it not been for my local family doc I would have been out looking for street drugs.  He gave me enough dope to take care of the pain after seeing my balls swollen to the size of tennis balls.  Finally, I got the pain and swelling under control and then things really started to change.  I am now as good as before Peyronies Disease.  Rock hard erections and increase in length with good blood flow into the glans.  The glans is actually larger than pre Peyronies Disease.
     
I wish I had gotten an implant 3-4 years ago.  FOR ME, nothing else worked and as I had suspected from the beginning there really was never much hope for treatment/cure.  Even without Peyronies Disease, knowing what I know now, I would opt for an implant.  It is impossible to get a normal erection that compares to an inflated prosthesis.  My wife is euphoric, to say the least.

I certainly do not intend to discourage you from trying whatever you think will help, I merely offer a different perspective.
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bert

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Re: I'm just thrilled to be posting here!
« Reply #11 on: November 25, 2011, 08:34:15 PM »

Sgt. Nick and Mercurza thanks for your perspectives. I'm happy for you guys that you're both ok with your conditions. Sgt. Nick, with all due respect I hope I don't need an implant, at least for a long time! I am relieved to hear though that you have found an acceptable alternative. Really - thank you for weighing in with that.
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Saint Hubbins
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Scorpiries

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Re: I'm just thrilled to be posting here!
« Reply #12 on: December 01, 2011, 11:57:49 AM »

sometimes i wonder why weird disease always happen to nice innocent people... i never play with girls' feeling... unlike some of my friends who always make fool on girls.. they will pretend to love a girl, and will leave her after they got "something" from her... but they're remain sexually healthy till now and keep making fool on girls... i think the world is unfair and feeling so naive... i also wondering why its never happen for those who doesn't need a perfect healthy penis like transsexual or shemale men...
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