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Author Topic: Need advice. Not sure where to post.  (Read 416 times)

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Michiganguy19

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Need advice. Not sure where to post.
« on: September 03, 2017, 11:53:50 PM »

I created this account awhile ago, but after seeing how bleak the outlook was decided it was better to not spend so much time on this site as it made me depressed. Just want to sum up my situation:

Got Reactive Arthritis (arthritis from a bacterial infection) November 2015. Due to a sinus infection, most likely from a infected tooth I've had for 2 years. Was filled but doc missed infection. Tooth now pulled.

Same time as I got arthritis, I got peyronies. Knew exactly what it was, but urologist wouldn't believe me. Had hourglassing etc, but no hard plaques.

Fast forward to now, urologist diagnosed me last month within peyronies, put on pentox 400 twice a day. Said early stages can only feel one plaque. Which is BS. I have ridges of hard scar tissue all over my penis. Doesn't think I'm a candidate for xiaflex. Said most of my shortening is probably from vasculitis. Rheum tested me for vasculitis, my blood flow is fine. I think ridges must be hard to feel with gloves on.

I don't know what to do. My penis has gone from 8.6in erect length, 6.2 inches in girth, to 5.8-6 inches in length and 4.4 inches in girth.

My arthritis is so bad my penis pops. Like a joint popping. I can tell exactly when my penis is getting damaged. If I get an erection, it pops. Use my bathmate pump... pops. Everything just damages it worse. Urologist says only thing you can do is treat connective tissue disease.

My c-reactive proteins (inflammation level for arthritis) is low, so my rheumatologist doesn't think my arthritis needs to be treated anymore. Which means my peyronies is getting worse every day. I've been on methotrexate, plaquenil, sulphsalazine, and nothing helps. Won't consider biologics which is the only thing that has a shot of working.

If this gets to a point I can't have sex at all I'm gonna end up killing myself because of this. Is there really nothing that helps? I can't use a pump because it damages it. And pentox honestly does nothing. I've made an appt with a different rheum but that's 2 months away. I'll be screwed by then.

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AlexSamo

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Re: Need advice. Not sure where to post.
« Reply #1 on: September 04, 2017, 01:53:14 PM »

My penis has gone from 8.6in erect length, 6.2 inches in girth, to 5.8-6 inches in length and 4.4 inches in girth.

Is this a "Peyronie's Disease forum" or a "Forum for porn actors with Peyronies Disease"? Ok, nothing, just another member with huge penis.

P.S. Sorry for offtop.
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Michiganguy19

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Re: Need advice. Not sure where to post.
« Reply #2 on: September 04, 2017, 07:15:57 PM »

Idk if it's appropriate on this site but I can post pics. My urologist did not believe me either I until I showed him pictures. Luckily you can look at the mapping of my veins and tell it's the same penis.
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swiss

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Re: Need advice. Not sure where to post.
« Reply #3 on: September 04, 2017, 09:14:34 PM »

I got peyronies shortly after an infection from an IV. I guarantee it had something to do with it. Nearly all my veins in my left hand went hard and it took over a year for my viens to go back to normal. I am so sorry for your pain bruva. I have gone through a lot this last two years and to top it off the love of my life just broke it off with me. I have been through so much pain this last two years that despite it all, I am feeling like if I can handle all this then I will be able to handle anything. I've basically hit rock bottom. I thought I hit it a few months ago and started to feel better...but nope...NOW I think its finally rock bottom after the break up.

Whenever my life has taken a wrong turn, I always come out stronger. ALWAYS. This time it took a while to dig myself out but I am on my way. Maybe my gf breaking up with me was the kick that I needed. I believe that if I was stronger in the relationship that we would be together still, but I failed myself. Do not allow yourself to fail. Anyways, be strong dude. Some days I don't feel like a man anymore, but I get my a$$ out of bed everyday and try my f'^+'ing hardest to love myself, to be patient with myself and to keep a positive attitude.

Im not sure what I did to deserve all this, but I sure as hell can handle it and if I can, then so can you.

On another note, I think you have some other underlying issues that need to be addressed. You need to find a doctor to take a look at the whole picture of what is happening in your body. What I find interesting is that both our stories kind of are similar...my infection was probably bacterial as well.

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Tsanchez12369

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Re: Need advice. Not sure where to post.
« Reply #4 on: September 04, 2017, 10:02:32 PM »

What's w the derogatory comments about penis size?  I thought this was a support forum?
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Michiganguy19

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Re: Need advice. Not sure where to post.
« Reply #5 on: September 05, 2017, 12:36:25 AM »

I think someone's mad I had a big penis. If it makes you feel any better, I don't anymore. And it's getting worse everyday. Good news it's it's stopped shortening I thing. But width is getting worse.
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Michiganguy19

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Re: Need advice. Not sure where to post.
« Reply #6 on: September 05, 2017, 12:38:14 AM »

Another question I have is I don't have plaques, more like hard ridges, or strings. Kinda feels like a guitar string. Anyone else?
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Michiganguy19

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Re: Need advice. Not sure where to post.
« Reply #7 on: September 05, 2017, 12:39:39 AM »

Also, is verapamil or xiaflex better? I don't understand how you can inject so much of something into a small piece of scar tissue. Does it work? Does it hurt?
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Michiganguy19

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Re: Need advice. Not sure where to post.
« Reply #8 on: September 05, 2017, 12:41:44 AM »

How do I bring up surgery to a urologist. I'm assuming since he didn't bring it up it's not an option. What about adding connective tissue to it? Is that possible?

Also best case scenario, I get on biologics to control my arthritis. If it controls Arthritis, it should stop peyronies. Had anyone with a connective tissue disease tried biologics to stop their peyronies?
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Michiganguy19

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Re: Need advice. Not sure where to post.
« Reply #9 on: September 05, 2017, 12:42:54 AM »

User oldnman told me there's another part of the forum to post pics, I'll do that in a bit.
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swiss

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Re: Need advice. Not sure where to post.
« Reply #10 on: September 05, 2017, 09:26:59 AM »

Yeah man I got the strings. I think it's similar to duypuytrens contracture seems like. People think it's related.
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