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Welcome to J Francois Eid, MD - Directly answering member questions in the "Medical Professionals" section below the Treatment boards.
https://www.peyroniesforum.net/index.php/topic,17819.0.html

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sodak

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New Member to the Forum
« on: December 27, 2012, 04:42:27 AM »

Hello,

   Well, I'm not quite sure where to start, so I guess the beginning is the best place.  First, I have to tell you I have not been to the doctor yet, so I'm self-diagnosed.   My issue started a little over six months ago when I noticed a slight curvature upward toward the very end of my penis.  The curvature was slight and it caused no pain, so although it was odd, it caused no concern for me or my wife. Over the course of the next couple of months the curvature grew more and more, but seems to have reached the maximum about a month or so ago....it doesn't seem to be getting any worse.  For me there is no pain, but definite difficulty with intercourse.  My wife has been very understanding, but I'm becoming extremely frustrated with the difficulty with insertion.  My wife has been very understanding about it, but it is definitely affecting me psychologically.

  I guess I should tell you, I'm 55 years old, married for 32 years and in very good physical shape.  I realize I need to go see my doctors, but at this point I'm still a little embarrassed.

 Thanks for listening
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BrooksBro

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Re: New Member to the Forum
« Reply #1 on: December 27, 2012, 12:53:31 PM »

 :(  Understand this, it is extremely unlikely to improve without treatment.  There is a possibility that it will get worse.  Call for an appointment right away.  Tell the doctor you think (it is OK to say "I am afraid...") that I have Peyronie's, and let him take it from there.  This is a terrible condition for men, and one that is not talked about in public very much.

You can start with a general urologist.  Ideally you want to see a physician who is a male sexuality specialist, and one with experience in treating Peyronie's.  How do you find one?  I always thought the best way would be to ask the first urologist I see which doctor HE would go see if HE had this.

You can tell if the urologist is the right one based on what he tells you during your initial visit.  If he says either or both of these, he is NOT the right one:  1- it will get better on it's own, 2- take vitamin E.  On the other hand, if he immediately prescribes Pentoxifylline and/or Potaba, then he has more up-to-date knowledge.

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MattFoley

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Re: New Member to the Forum
« Reply #2 on: December 27, 2012, 01:55:47 PM »

To add to what BrooksBro said, although you sound like your testosterone levels should be OK, it's best to insist to your doctor that you get blood work done to determine what you testosterone levels are at this point.
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sodak

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Re: New Member to the Forum
« Reply #3 on: December 27, 2012, 02:29:51 PM »

Thanks, those are my primary concerns.  How do I select a doctor and what do I ask him once I make the appointment?  Also, how do I describe the extent of the problem?
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MattFoley

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Re: New Member to the Forum
« Reply #4 on: December 27, 2012, 02:55:27 PM »

The primary question is: Do you treat Peyronie's? Not many urologists do so you need to find one that knows what the hell he's doing.

Beyond that, the other guys in this forum are probably better at answering your question.

But whatever you do, make sure you get that testosterone checked. Please.
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james1947

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Re: New Member to the Forum
« Reply #5 on: December 27, 2012, 05:22:40 PM »

Sodak

You may find a doctor close to you on the "Urologists and other Doctors" board that forum opinion is good about them.

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

sodak

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Re: New Member to the Forum
« Reply #6 on: December 27, 2012, 05:40:15 PM »

I checked that section, but since I live in the boonies of South Dakota, there was nothing close.  Fortunately another member private messaged me with the names of a couple of urologist in my area. 

I'm very glad I found this board...between the encouraging words of others on the board and a couple private messages, I have found the courage to make an appointment.

Thanks all! 
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sodak

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Re: New Member to the Forum
« Reply #7 on: December 28, 2012, 04:49:53 AM »

One other thing I wonder about...many of the posts I read talk about pain and an obvious area of plaque build up.  I have no pain and can feel no plaque build up.  Is this typical in the early stages?  Is pain in my future?
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james1947

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Re: New Member to the Forum
« Reply #8 on: December 29, 2012, 04:53:48 AM »

Sodak

From my private experience, the plaques appeared very slowly, same the bent and curvature and I never had pain.
Because you are in the very beginning of this disease, you have to treat it as soon as you can to stop it from progressing.
Pentox may help (a prescription drug) but many supplements also. I am advising you to read the forum boards and to decide how you want to fight this disease.

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: New Member to the Forum
« Reply #9 on: January 02, 2013, 07:06:34 PM »

I would encourage you to see a specialist and get a proper diagnosis so you know for sure what you are dealing with.
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sodak

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Re: New Member to the Forum
« Reply #10 on: January 05, 2013, 11:04:11 AM »

An update and a little help please.

Well, I've mustered up the courage to make an appointment with a urologist.  It's scheduled for the afternoon of January 17th.  Can someone tell me what to expect and maybe help me with some questions to ask.

Thanks in advance for your help.  If you'd rather private message me, that's fine with me.
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MattFoley

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Re: New Member to the Forum
« Reply #11 on: January 05, 2013, 05:03:08 PM »

I would ask him if he treats Peyronie's. If no, ask him to give you a referral to the best one in the area and then skip down to question #6:

1. What is his success rate?

2. What is his initial protocol?

3. What about Pentox?

4. Supplements?

5. VED/Traction?

6. Tell him you want a full panel of blood work done, including testosterone.


I know there's more but in my opinion, that's a good basis.
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Hawk

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Re: New Member to the Forum
« Reply #12 on: January 05, 2013, 05:52:06 PM »

Sodak,

Welcome to the forum.  First, some man to man straight talk; You are too old to be neglecting your health because of embarrassment or modesty, or fear.  With Peyronies Disease it can significantly alter your life and directly alter the life of someone you love dearly.  With other conditions, it will kill you.  It is long past time to grow out of that mind set.  Incompetent doctors are bored with your bent penis story and good doctors are very interested and empathetic.  It is another day at the office that defines their lives.

The most important thing you can do is go to our Resource Library board and print the 3 or 4 articles on Pentox.  Read them and take them to your doctor with the statement "If this is Peyronies Disease, I read that some leading urologists are using Pentox with positive result that are backed up by clinical studies."  You need not mention the forum.

Best wishes
Hawk
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
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Hawk - Updated 10/27/18 - Peyronies Society Forums

sodak

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Re: New Member to the Forum
« Reply #13 on: January 17, 2013, 05:26:53 PM »

Well, I had my first appointment with a urologist this afternoon.  He was very professional and put me at ease almost immediately.  After chatting for a while and an examination, he verified my suspicions and diagnosed Peyronies.  Although I was unable to detect any plaque during my self examinations, he was quick to show me where the plaque buildup was and how it affected the curve.

We talked for quite a while about different treatments and a little about his background with the disease.  He seemed to be very familiar with Peyronies and told me he was a student of Dr. Levine from Chicago.  He laid out all the options, to include injections and surgery.  He's not a fan of injections and feels the surgical option is still way down the road.  For now, he wants to treat me with supplements, ibuprofen, and a topical creme.  Here's what he prescribed...

1.  500 mg capsules of Acetyl L-Carnitine twice a day

2.  400 mg of Vitamin E twice daily (doesn't think it will help, but won't cause any harm)

3.  an Aleve tablet 2 times daily

4.  Verapamil creme twice daily

Any thoughts?
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MattFoley

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Re: New Member to the Forum
« Reply #14 on: January 17, 2013, 05:44:15 PM »

Here are my thoughts:

1. Acetyl L-Carnitine (ALCAR) is good. I use the powder instead of the capsules because I think it's a lot cheaper. I mix it into a protein drink. Someone else here recommended 2,000 mg/day.

2. OK.

3. OK.

4. Topical Verapamil is disputed here in this forum. Where are you going to get it? Other than Verapamil, what is going to be in it because you still need a delivery chemical to get it into the penis. It's also expensive.

What about Pentox? This is considered the first line of attack here in this forum. If he's a student of Dr. Levine, why is this not included?

Blood panel test?
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Hawk

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Re: New Member to the Forum
« Reply #15 on: January 17, 2013, 08:38:05 PM »

I echo MattFoley's comments except to add that I have never known anyone that improved from topical Verapamil and I have listened to ten years worth of anger, frustration, and disappointment from those that used it.  Also I cannot see "a student of Dr. Levine " ever prescribing it.  I also cannot see "a student of Dr. Levine " not addressing Pentox.

The Verapamil will take the lump out of your wallet but it will do nothing for your penis except waste precious time. I would be slightly more optimistic about iontophoresis

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Hawk - Updated 10/27/18 - Peyronies Society Forums

MattFoley

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Re: New Member to the Forum
« Reply #16 on: January 17, 2013, 10:52:27 PM »

I would be slightly more optimistic about iontophoresis

That's one of the questions I have for my urologist when I see him next week. Still, I'm not sure how Verapamil will work unless it's trapped in the penis so it can do the job. I don't know.

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funnyfarm

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Re: New Member to the Forum
« Reply #17 on: January 17, 2013, 11:39:00 PM »

As Hawk mentioned nobody has ever reported positive results from topical verapamil.    A few have seen improvement with the injections though so that is always an option.  Empirically they appear to be the minority however.
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sodak

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Re: New Member to the Forum
« Reply #18 on: January 18, 2013, 04:30:31 AM »

Well, I was feeling a little better yesterday after the visit to my doctor, but you guys aren't very encouraging.  We talked about Pentox and traction, but since I'm in the early stages, he wanted to go the supplements and topical creme first.  Thanks
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GS

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Re: New Member to the Forum
« Reply #19 on: January 18, 2013, 08:54:16 AM »

I would think long and hard about ordering Pentox on line without your doctor's prescription.  I was 8 or 9 months into Peyronies before my urologist prescribed Pentox and I still wonder how much better I would be today had I started it earlier.

GS
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sodak

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Re: New Member to the Forum
« Reply #20 on: January 18, 2013, 11:17:35 AM »

Can you order it without a prescription?  If so, where?
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Jonbinspain

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Re: New Member to the Forum
« Reply #21 on: January 18, 2013, 11:41:14 AM »

Try these guys. A lot of members buy from them..

https://www.riverpharmacy.ca/drug/trental
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MattFoley

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Re: New Member to the Forum
« Reply #22 on: January 18, 2013, 03:50:20 PM »

Or, you can do what I would do:

Call your doctor up and insist on the Pentox. Some doctors want to make their patients happy and as long as it doesn't involve controlled-drugs, they are likely to be cool with it. Otherwise, I would get another doctor.

Let me give you an example of what I did:

When I read in this forum that Dr. Lue recommended 2,400 mg of Pentox daily, James1947, one of the moderators, gave me the link where I would find the clinical study where Peyronie's doctors recommended the higher dose and I forwarded that to my urologist. My urologist re-wrote the Pentox prescription as per the study within the week. My urologist works with me to find a solution and that's what I like about him. I'm not ordering him around by any means but he keeps an open mind and is not adverse to looking at various solutions. Plus, I laid the groundwork for his next Peyronie's patient when it comes to Pentox prescribing.

A happy ending for everyone. :)
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sodak

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Re: New Member to the Forum
« Reply #23 on: February 16, 2013, 10:33:15 AM »

Has anyone on here had any luck with the topical application of Verapamil creme?  I have a local pharmacist making the creme for me, but it's rather expensive.  I don't want to waste my time or money on something that has little to no hope of helping.  I've been using it for a month now and about to run out. Would like some feedback before refilling my prescription. 

MattFoley...I'm a little worried about Pentox.  I already have issues with anxiety and have read on this forum that Pentox can exacerbate the problem.  But, the more I read, the more I see little results from anything else. I have my yearly physical scheduled for early next month.  I'm going to talk to my doctor about it and bring a copy of the study you mentioned.
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Hawk

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Re: New Member to the Forum
« Reply #24 on: February 16, 2013, 10:43:52 AM »

Topical (transdermal) Verapamil has probably cost men on this forum more money and done less than any treatment that has any medical support.

I would not buy it but I might use it if it was free as long as it was not too much trouble.  If so I would use it with pentox and traction.
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
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Hawk - Updated 10/27/18 - Peyronies Society Forums

Jonbinspain

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Re: New Member to the Forum
« Reply #25 on: February 16, 2013, 11:08:02 AM »

Sodak.  Yes, Pentox can cause anxiety problems. Personally, I found these to be relatively mild and virtually disappeared as my body became accustomed to the drug. If you're worried about this possible side effect, perhaps your doctor might prescribe a mild tranquilliser to counteract it? If not, a couple of beers should do the trick  :)
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MattFoley

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Re: New Member to the Forum
« Reply #26 on: February 17, 2013, 02:22:01 AM »

sodak, if a medication has side effects of anxiety, I always get it but Pentox doesn't do it to me. I tapered up to my maximum dose so my body adjusted quickly.
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