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Author Topic: My Introduction  (Read 479 times)

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otto

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My Introduction
« on: November 29, 2017, 07:18:00 PM »

Hello! I am 49 years old and married.  About 6 weeks ago I noticed a lump under the skin of my penis when I was holding it going to the bathroom.  I had already scheduled a yearly check up with my regular doctor about 3 weeks later.  So, after the checkup examination I got a referral to a urologist (which seemed to take 2 weeks plus some scheduling delays because of Thanksgiving).

My urologist appointment was on Monday (11/27) with the diagnosis of Peyronie's Disease.  So, I'm just getting up to speed on what I have, and what I need to do next.  My urologist has some experience with Peyronie's.

I don't have any memory of any type of injury.  And I don't know how long the lump was there before I noticed it.

My only symptom right now is the lump.  I don't have any other symptoms that are listed on most of the medical sites. I haven't tried any treatments.  I'm open to suggestions.  I do have insurance.

I read through the getting starting page.  So I did order all the over the counter vitamins/drugs.  I was already taking CO Q10 for better joints (but I'm going to up the dose).  I also took the measurements for my baseline.

I guess I should go back to my urologist and request a ULTRASOUND/SCAN to determine a baseline/blood flow/density.

Any other near term suggestions?  Thanks!
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Sadguy

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Re: My Introduction
« Reply #1 on: November 29, 2017, 07:33:46 PM »

Can you tell me how is your lump? Is it very noticeable?
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DN

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Re: My Introduction
« Reply #2 on: November 29, 2017, 09:09:35 PM »

You're so early and I guess that's a good thing. I discovered mine just like you: was taking a pi$$ and "huh, what's that little tiny beed?" Fast forward a few weeks and it was still there, went to the doctor, then urologist, then 3 more urologists. It's now been 7 months since I discovered the beed and I'm experiencing erectile dysfunction, my "little tiny beed" is now several almost pea sized nodules, and I have indents in my erection.

This may not be your story. However, there really are two types of peyronie's onsets: rapid development of curvature and hour glassing, or slow progression of plaque and subsequent deformity. Seems like yours is of the latter. At your stage the only suggestions would be:

Pentox 400 mg x3 daily
Cialis low dose daily
CoQ10 300-400 mg daily
L-argenine 2000 mg daily

Without any deformity it might be a waste of your time to start traction or VED, I guess wait on that.

Take a picture. Or maybe don't........

Sex... well this is a hard one. To have or not to have, that is the question. The specialists I've seen say don't have sex if it hurts but have sex if it doesn't. Funny suggestions because often the pain I feel from sex comes AFTER the sex so... Masturbation, same situation, there really isn't a definitive answer for these things. I have read about guys progressing despite not having any sex at all. If you can stomach it, perhaps don't have sex for a couple of months. I didn't do that, I had and am having sex, it's only gotten worse for me. Mentally I can't stomach it. Not having sex hoping it gets better, is not having sex working? When can I have sex again... Seems like a formula to make you insane.

You could get an ultrasound of the fibrosis, I would doubt they would do it for blood flow, they never seemed to want to do it for me (n = 4 urologists). But a specialist would identify the location and size of the fibrosis. However, it's so early all you would learn is, yup there it is. If it's on the dorsal side (top) then this is often associated with dorsal curvature.

I'm not a medical doctor but I would say I'm about as much a Peyronie's specialist as a non-medical doctor can be having read ~100 medical journals, read through this site thoroughly, read through Franktalk thoroughly, met with 4 urologists (Dr. Lue and Gelbard), and been investigating my peyronie's dick for several months. Here's what the medical field can do for you:

1. take the medications above
2. Either start traction/VED now or once deformity begins

         do the above until you feel you are in the stable phase (~12-18 months after onset)

3. If curvature gets to ~30 degrees pursue Xiaflex injections
4. If xiaflex injections don't work and sex is difficult pursue surgery

You could go see a specialist, you could get ultrasounds, you could run around your state or the country talking to urologists but, unfortunately, there isn't much else.

Communicate with your wife. Try to relax and take the medications and try not to check your dick.
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crookedjohn

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Re: My Introduction
« Reply #3 on: December 18, 2017, 05:15:30 AM »

The first couple of urologists I went to see were no help. My advice is find an expert in the treatment of Peyronie's. My insurance  Premera BCBS  denied my application for Xiaflex. The cost of the surgery that I just had was about the same as the cost of the Xiaflex. 
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