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RickG

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Diagnosed Yesterday
« on: May 16, 2012, 01:57:45 PM »

I am still alternating between shock and denial, this has all happened so fast.

I noticed a tightness and discomfort about a month ago. Felt what I now know is plaque a couple of weeks ago. Made an appointment. with my internist at that point. Sunday night during foreplay, my penis curved for first time and I freaked out. Luckily my appointment with my Internist was Monday, he thought it was Peyronie's and referred me to a urologist. Was able to get in Tuesday (yesterday) morning and got the official diagnosis of Peyronie's.

My head has been spinning ever since. My only peace is to completely distract myself through work or reading or TV, to get out of my head. After getting home from the Dr. yesterday I threw myself into work for a couple of hours. Then started to do some research online. The more I read, the more upset I got. Decided to take the afternoon off, crawled into bed and went fetal.

I'm gay and partnered for 7 years. I told my partner I wasn't ready to talk, I was scared and head spinning. He's upset because I'm not talking to him about it. I feel myself spiraling into a depression. As a write this my eyes are starting to tear up. This sucks. It is a major turning point in my life, I haven't accepted it. Want to scream WHY ME?

I am 47, and for better or worse my self worth as a adult male has been very closely tied to my penis. I'm average looking, short, have an OK job, intelligent but not the quickest wit. But what do (did) I have? A larger than avg one, straight as an arrow, it was one of the few areas of my body and my life in general that I didn't have any insecurities about.

My course of action: take high doses of vitamin e for a few months, then go back to urologist. Can't have intercourse with the curve as it is, so have gone from having a healthy sex life one day to what? Hoping that the curve goes away in the next couple of months. And if it doesn't, choose from several options, none very promising. Sorry to be so negative.

This forum is the brightest spot in the last few days, I am glad it exists.
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RickG

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Re: Diagnosed Yesterday
« Reply #1 on: May 16, 2012, 04:30:44 PM »

Have started reading through some of the posts here and have already learned a lot. Just left a message for my uro about my treatment or lack of...want to talk about Pentox and Cialis. He did suggest the VED, so will def be doing that. Going out to buy L-Argenine (sp) tonight! Feeling better just being proactive about this.
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LWillisjr

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Re: Diagnosed Yesterday
« Reply #2 on: May 16, 2012, 06:23:10 PM »

Being proactive is what gave me hope. I felt like I was taking my destiny in my own hands. This doesn't just go away on its own even though that is what most of the urologists are trained to say. Because they don't know any better.

There is a lot of information including here, and advice from those of us who have overcome this disease. Be proactive, don't wait. Investigate traction and/or VED therapy. And talk to your partner. Having a supportive partner is is very important.

Les
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Les - 10 yrs Peyronies Disease free
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james1947

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Re: Diagnosed Yesterday
« Reply #3 on: May 16, 2012, 06:54:33 PM »

RickG

If you have already this disease, welcome to the forum. You was preferring not to be here, but in my opinion this site is the best to guide you in this ordeal and also to learn from you.
 
I suppost lwillisjr words one by one. Being proactive with this disease from the beginning is the key to successfully fight it.
Myself waited more than two years to do something, so my options are much less and the cure is very slow.
Being proactive with your life it will help you to overcome the psychological aspects of this disease.

Regarding treatment, your uro is like most " take vitamin E and come back in six months" and "in most of the cases of Peyronie's the symptoms will just go away". Vitamin E only helping some people, some not and in very few cases the Peyronie's just gone alone.

VED is good for start, same as Pentox, L-Arginine and low dose Cialis that helps nocturnal erections and maybe reduces the plaque also.

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

reynell

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Re: Diagnosed Yesterday
« Reply #4 on: May 17, 2012, 12:11:49 AM »

rick g
I think we all have gone or are going through what you are. It is very difficult to do with out affection for extended time, mine has been for a bout six years.  Maybe two or three attempts a year but didn't get any enjoyment so whats the use.  Its natural to be negative. I was too but you will  get to a point where you refuse to just sit by and let your life go out the door.  I'm at the point that i want  a lets get it done surg i don't care how much pain or how long the healing takes even it i have to get an implant I'm going for the touch down.  You will do fine.  Your game plan, like keeping your mind off of it is the same thing i do to keep going and it works. You always have people here to vent to.  Good luck keep me informed.
reynell
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Povera me

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Re: Diagnosed Yesterday
« Reply #5 on: May 17, 2012, 01:49:53 AM »

Rick G. So sorry to hear your story. Mine is similar, except I have no partner. I hope you have the courage to talk to him about it. Big penis's are definitely part of gay culture, but as we grow older, our virility and image does decline. erectile dysfunction and other forms take hold as our natural body processes diminish. Call it evolution, male menopause so the next generation will be stronger, etc. But I hope you talk with your partner. You don't know how encouraging (ironic) your story was to me. I too, have rolled up into a fetal position, having to readjust the image of myself from what it was. I have hope that my dick will be straight and spherical and impressive again, but I also hope that who I am, which is so entwined with my sexuality and represented by my dick, survives this. Peyronies is a patience event. Attack it quickly, which you have done, and follow through for a long time. Here's to you and your journey and the successful outcome.
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RickG

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Re: Diagnosed Yesterday
« Reply #6 on: May 17, 2012, 02:04:33 PM »

Thank you all! It has helped just to know you are there for support. I am talking to my partner and he is helping me research the disease.

I haven't gotten a call back from my uro yet so don't know his reaction to Pentox. Will be looking for a new doc in NJ/NY area if he wont give it to me.

Can someone clarify Acetyl-L-Carnitine vs. L-Argenine? In medical literature I only see one promissing study with Acetyl-L-Carnitine – 1 g daily from 2001 (Biagiotti G, Cavallini G). But everyone on this board mentions L-Argenine. Is there some study I am missing? Same question for Cialis/Viagra. I'm not experiencing erectile dysfunction, is this intended for those also suffering from erectile dysfunction or might it help with Peyronies Disease? Again, can someone point me to any research.

Also, there was another promising study from 2010 on CoQ10 (Safarinejad MR). Anyone have experience with that?

I'm hoping the doctor will call me this afternoon and I am trying to be as informed as knowledgeable as possible. Honestly overwhelmed by all the information on this site and elsewhere. But I'd rather be overwhelmed with this than in the fetal position.

Thanks guys.
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goodluck

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Re: Diagnosed Yesterday
« Reply #7 on: May 17, 2012, 03:56:05 PM »

L arginine is to help with erections.  It is a precursor to nitrous oxide.

Acetal-L-Carnitine helps with the mitochonria which is in every cell in your body.  It also helps with congnitive and physical energy.  If you take it too close to bed it may impact your sleep.
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james1947

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Re: Diagnosed Yesterday
« Reply #8 on: May 17, 2012, 03:59:52 PM »

I am not a big expert in the subjects you are asking questions, but until you will get some specific answers try to read under:

"Oral Treatments for Peyronie's Disease"
The topic:
Coenzyme Q10 - Ubiquinol« 1 2 3 ... 8»
A very professional debate is going on the subject of C0Q10 and a lot of information.
And the topic:
SUPLEMENTS - Arginine, Carnitine, Citrulline« 1 2 3 4»
And the topic:
CIALIS, VIAGRA, LEVITRA effects, questions & availability « 1 2 3 4»

You may find the information you are looking for.

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

Povera me

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Re: Diagnosed Yesterday
« Reply #9 on: May 18, 2012, 02:00:26 AM »

Goodluck is right. Look on the labels of most male enhancement herbal supplements and they will list L-Arginine along with pumpkin seed, horny goat weed, etc. But a head's up. It has been noted that if you have genital herpes, L-Arginine may cause a flare up. Make sure, if you decide to use it, that you do your research and possibly balance it with L-lysine. Just wanted RickG and others to know (if you didn't already)/
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RickG

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Re: Diagnosed Yesterday
« Reply #10 on: May 22, 2012, 06:20:44 PM »

Thank you. Great resources. I am now taking Acetyl-L-Carnitine, L-Argenine, CoQ10, along with lots of E and C.

Still waiting for a call back from my uro, I called a week ago tomorrow, and the recording said I should expect a call back in 24 hours. I left another message today. Really?

Regardless of if I get a call back tomorrow or not -- I am looking for a new uro in the NY/NJ area! Any suggestions? I read about a couple of dr on this site, and I don't think what was said was positive. I want the best in NYC at this point (as long as covered by insurance, lol). Any recommendations appreciated.
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Luciano

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Re: Diagnosed Yesterday
« Reply #11 on: May 23, 2012, 11:45:24 AM »

Thank you. Great resources. I am now taking Acetyl-L-Carnitine, L-Argenine, CoQ10, along with lots of E and C.
Beware and inform yourself. Taking too much vitamin E can have very negative effects. (heart problems etc...) So keep the dosage small.
Luc
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YMENOW

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Re: Diagnosed Yesterday
« Reply #12 on: May 23, 2012, 06:12:14 PM »

You are taking the meds that perhaps will help you but you have not mentioned that you are doing the VED therapy which will help you the most.  You are in the earliest stages and this is the most important thing that you can do for your dick.  START  PUMPING religiously. 

I started late after all the symptoms that you had, but I was much older.  Vitamin E was recommended by my Uro but later my cardio doc asked me "if I want my dick or my life?"   There was too much scarring and I was losing girth and length to boot.  However, when I finally got the VED I started to regain some of what I lost. 

In the end and that is why I returned to this site, is that I now have an IMPLANT and I don't like it at all.  I should have kept pumping with the VED and kept my old buddy.  Now the sex is mechanical and I could be using a dildo.  It is difficult to accept, but my wife has been supportive all through my "dick days".  I thought I wouldn't have to pump, but I do  to keep my member healthy.  So I really didn't get anywhere.

Hope things get better for you and you have to talk to your partner about what is happening. 

Mike
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james1947

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Re: Diagnosed Yesterday
« Reply #13 on: May 23, 2012, 06:31:10 PM »

YMENOW

Can you give some more details why you don't like your implant?
I would like to know because I am planning to have one.
Until now I heard just positive reports regarding implants made by some famous doctors.

Your input will be very appreciated.

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

YMENOW

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Re: Diagnosed Yesterday
« Reply #14 on: May 24, 2012, 03:03:30 PM »

James,

There is nothing wrong with the implant and the doctor was one of the best in the country.  I am referring the mental and physical aspects of it.  I thought that I wouldn't have to be pumping with the VED and I still have to pump to get it up.  Our lovemaking is different now since I just pump it up before I get into bed, whereas before it would get hard during sex.  It was nice to cuddle and touch in bed, but now it is hard.  It feels like it is semi hard all the time, and I keep trying to deflate, but it inflates on its own. The member doesn't lay down, but it is sort of rigid.  I guess with time and lots of usage it may break down the plastic and it will be more feeling more natural as well as looking more natural.  (can't wait) ;D

I was thinking aloud when I wrote my last post.  I was able to get hard with Cialis and viagra and all was satisfactory.  I was losing to the scar tissue forming and the daily pumping was getting to me.  I hated the "routine" so I figured the implant would be good for me....  All I am saying is that if you can't "stand it anymore" ....think about the permanence of an implant.  There is no going back to what you had.  Pm me if have any questions re the implant.

y
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RickG

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Re: Diagnosed Yesterday
« Reply #15 on: May 24, 2012, 06:18:13 PM »

YMENOW

I am working fast and furious on VED believe me. Doc recommended Osbon Erecaid, but it is $$$ and insurance doesn't cover it, 0 benefit for this. I just got off the phone with Osbon after they verified insurance coverage. So the rep recommended another device from Encore manual for $118 cash price. He's emailing more info. And Old Man suggested I also check out a Vitality one for ~$100. I will be making a choice in the next few days and will be pumping away.

I was diagnosed a week ago this past Tues, so think I am moving along pretty fast. I was delayed a week waiting for my uro to call back, but finally talked to him and thing are moving along again. He is open to Pentox, once I make a decision on the VED, I will call him back and hopefully get a script for Pentox. He is not on board with Cialis or Viagra. But I'm not sure I need it, I don't have erectile dysfunction and since I started taking L-Argenine I'm getting morning wood on a regular basis. Should I press him on getting Cialis?
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LWillisjr

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Re: Diagnosed Yesterday
« Reply #16 on: May 24, 2012, 07:48:48 PM »

RickG,
I was also able to achieve erections during the period I had Peyronies. I went to Dr. Levine and he just had me on Pentox and the L'Arginine (along with traction). He felt Viagra/Cialis wasn't necessary.
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Les - 10 yrs Peyronies Disease free
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Old Man

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Re: Diagnosed Yesterday
« Reply #17 on: May 25, 2012, 07:25:54 AM »

YMENOW:

I am confused about your implant problem. From your description of what you are saying, sounds like that you did not get the three piece model implant. Appears that you have the one piece malleable rod type which remains in the same shape all the time. You simply mold it to the shape you want it to stay in, etc. It does not expand at any time either as well it does not extend in length.

The VED is usually not needed nor recommended in most cases to develop erections with an implant. Jack is the resident expert in implants and he can answer your questions. Suggest you contact him for help with your problem. Implants usually do not cause problems like you mention about "pumping up" before having sex.

Also, please explain in more detail by posting on the main forum about what you are experiencing. There a lot of guys considering implants and need all the background they can find on having one done.

Old Man
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Peyronies Disease @ age 24, Prostatectomy 1995. Started VED therapy 1995, Heart surgery 2004.three passes with three stents.

RickG

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Re: Diagnosed Yesterday
« Reply #18 on: May 31, 2012, 09:46:01 AM »

Thanks lwillisjr.

Update on VED: ordered the Augusta 3 cylinder unit yesterday, met with the mfg rep who personally reviewed with me the 26-week protocol. Should get the unit in a few days and will start pumping away. Thanks to Old Man and all on this forum for all of the advice, much appreciated.

Hopefully by then I will have my script for Pentox and will be on my way.

I hope it works.The pain is getting worse when I get an erection, sex is uncomfortable. Curving is about the same, although I think the plaque is getting larger.

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RickG

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Re: Diagnosed Yesterday
« Reply #19 on: June 12, 2012, 08:48:53 PM »

One more update. Thanks all again for the counsel and guidance.

Started VED Wed last week, got the 3-cylinder Augusta model. Will be in week in to the 26 week protocol as of tomorrow.

As far as oral therapies, I have a routine down there, too. Started Pentox as of Friday. Also taking L-Arginine, Acetyl L-Carnatine, CoQ10, Vit E, and low dose aspirin.

So now I am in my routine and hoping for the best.

The mental part of this is the hardest. Life turned upside down, penis deformed, sex painful. Everything is so different. Still going through stages of grief, mostly just depressed. Trying to stay positive and focused on the plan. 
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james1947

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Re: Diagnosed Yesterday
« Reply #20 on: June 12, 2012, 09:13:23 PM »

RickG

In my opinion, you are on the right way.
Just one question:
What is the reason for taking the low dose Aspirin?
I am taking 100mg Aspirin also but not for Peyronies, I had a hearth attack back in 1995.

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

LWillisjr

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Re: Diagnosed Yesterday
« Reply #21 on: June 12, 2012, 09:57:05 PM »

Rickg,

Stay positive. If you stay focused with your therapy things will get better. Don't let this drag you down mentally.
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Les - 10 yrs Peyronies Disease free
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RickG

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Re: Diagnosed Yesterday
« Reply #22 on: June 18, 2012, 04:52:01 PM »

James - I'm taking the low dose for a few reasons: besides it being linked to heart health, studies have also shown it reduces inflammation in general, which has been linked to various forms of cancer -- so for both of these reasons I have been considering it.

My thinking related to Peyronies is the plaque must have resulted from some sort of injury/inflammation at some point. I am doing all of these things to break down the plaque (VED, Pentox etc.), so reducing inflammation throughout my body couldn't hurt.

Lastly, I was warned about the danger of taking a lot Vita E, so my thinking is it could help counteract that, too.

I am not a doctor, nor do I play one on TV, but it makes sense to me  :)
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cowboyfood

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Re: Diagnosed Yesterday
« Reply #23 on: June 19, 2012, 09:50:01 AM »

RickG,

I, too, agree with your treatment plan.  Attitude is a big part of sticking to it. 

Also, I encourage you to consider taking vitamin D, in the form of a D3 capsule.  On this forum, there are a lot of posts about the positive influence D3 may have on our overall health and immune system.  In particular, see George999's posts. 

In regard to the VED, especially in the beginning, be patient and work through any frustrations.  IMO, it's like a workout routine, in that the most important thing in the beginning is to make the time to do the protocol on a daily basis, regardless of how "well" you are using the VED.  Allow yourself a few weeks to get use to the device.  It won't be long before you're very comfortable with it.  Also, I would not stretch yourself out to the max in the beginning.  Just get use to using the VED and stretching out somewhat.  In a quick amount of time, you'll be able to use the VED to maximum effectiveness.

Also, many have found the most narrow tube to be difficult, which seems to be typical based on my own experience and reading others' posts.  If that's the case with you, I encourage you to keep using that tube and over time you will get comfortable with it.

CF
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Currently:  L-Arginine (2g), Vit D3)

reynell

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Re: Diagnosed Yesterday
« Reply #24 on: June 20, 2012, 12:00:27 AM »

rick

I agree. I asked my Dr what i should take post-op OTC meds that would help me.
He said any thing that helped heart healthy or healthy for the blood is good.
I take low dose aspirin, multi vit, Vit D and E and omega 3 fish oil.
Being over weight and smoking have a big negative affect on a mans erections.

I was on anti depressants for years until i found out my vit D level wasn't even on the charts.
It was a third of what it should have been. I got to Vit D and in three months I'm off all anti depressants and been off them for about 4 years. So vit D is a good thing for some one going through so much stress.
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RickG

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Re: Diagnosed Yesterday
« Reply #25 on: June 28, 2012, 05:50:14 PM »

Thanks guys, I'm going to do more research vit D.
I am taking a calcium supplement too, because I am borderline osteopenic. It has some vit D in it -- is that different?

Also, I read somewhere on the board about a connnection between epiditimitus (sp?) and peyronies...does anyone know anout that? I suffer from it everyonce in a while, it has gotten better recently but for the past 5 years off and on, it has been horrible. I'm wondering if there is a connection
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swolf

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Re: Diagnosed Yesterday
« Reply #26 on: June 28, 2012, 07:47:03 PM »

Also, I read somewhere on the board about a connnection between epiditimitus (sp?) and peyronies...does anyone know anout that? I suffer from it everyonce in a while, it has gotten better recently but for the past 5 years off and on, it has been horrible. I'm wondering if there is a connection

I had epididymitis several years ago and was prescribed a course of antibiotics which got rid of it. Later, I contracted Lyme disease and was prescribed what I think was the exact same antibiotic. I believe both of those instances contributed to my eventual (ongoing) bout with Peyronie's.

EDIT: I should add that the tick bite I had that resulted in Lyme disease was on my left thigh very close to my groin. The doctor I went to said it was the biggest bulls-eye bruise she had ever seen - about the size of a softball if I remember correctly. The inguinal (the groove between your thigh and abdomen) lymph nodes on my left side were very inflamed, as were nodes in my scrotum. I think the antibiotics I took for both of those conditions, plus the fact they directly affected my groin, led to... I don't know, a weakening there which allowed Peyronie's to appear. The Lyme disease was in 2011 and led directly in to the appearance of Peyronie's.
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