On my Fourth Urologist

[Kickit40]

Hello everybody, I wanted to share my story in hopes that are any possible recommendations or potentially help others.

So this has been going on for awhile....

Toward the end of 2018 I was having some ED issues but didn't think that much about because there was a lot of stress going on at work and it wasn't just happening.

I had a vasectomy the early part of January in 2019.  About three days after the vasectomy I injured my penis stepping into a truck (sounds stupid and unsure how I hurt it).  The injury resulted in a bruise down the left side of my shaft and into the high groin area.  I waited a little bit before going back to my urologist and he said everything should be fine but I had small hematoma where my penis meets my groin.  Fast forward a few weeks my entire penis started to feel hard whenever I was flaccid and was a little smaller than normal.  I went back to the urologist and he said this is something he hasn't seen before.  He Rx me some medicine in case it's an infection and told me to come back in two months.  So I did and had the same condition, he said I should see another urologist.

I went to see the second urologist and he thought I had high flow priapism.  He thought it would heal itself but said I could get an arteriogram to see if there was a fistula.  I got the arteriogram because I am trying to figure this thing out and unfortunately the arteriogram showed nothing.  Went back to the urologist and he recommended I see someone else.

The 3rd urologist said this isn't something he has seen before but thought it would pass.  I told him I can get about 75% erections sometimes but that's when I am fully aroused. He Rx Pentox and daily Cialis with the hopes the body would cure itself and he tested my testosterone which was 320.  I went back to him a few more times without much improvement and he recommended another urologist to me.  He thought I had a form of Peyriones but my penis doesn't have any curves, hasn't changed in size, and the harden spots are on both sides of my shaft running up and down the penis.

In searching for help I came across a medical clinic that uses a tool similar to Gainswave called Big D Wave.  I have gone through six sessions of the Big D Wave along with getting a P-Shot.  I also have being doing VED for about a month.  I would like to think I have had progress with the treatments.  They also tested my testosterone and it was 280.  I recently got on pellets a week ago to boost my testosterone to see if that will help.

Every specialist I talked states they have never seen anything like this before.  My penis looks the same size flaccid or erect, maybe even slightly biggest because of VED, but along the entire shaft on both sides it feels hard (no curve).  I can press into the penis with no or very little discomfort and when I pee the penis feels close to normal. I will even take a 20mg dose of Cialis and my erections are still not consistent.

I have been on Pentox, L-Arginine, Vitamin E, and daily Cialis for about three months now.

One urologist thinks I have a form of Peyriones but is unsure and the other urologist don't know what to think of my condition.

I have an appointment scheduled with another urologist scheduled for next week.

Any help or ideas or suggestions? Or maybe you know something I don't.

Thanks in advance.  

[Pfract]

Hey man. I know of a doctor that has dealt in the past with high flow priapisms and has proper diagnostic equipment on his practice.  He is super well known. Even if you don't do any procedure there, you can know exactly what you have.

Curiously, he gave me a book he wrote years ago, and he describes several cases of situations he dealt with. One of them, was of a guy that fell down, and also had similar symptoms to what you describe. I can take pictures of the book if you want.

Dr Irwin Goldstein, of SanDiegosexualmedicine.com . I have been there, and for cases like these I couldn't recommend him more.

Priapism | San Diego,CA <-Read this

[Kickit40]

Pfract:

Thanks for the reply and the great information.

If you don't mind send a picture of the book.

I went on the website that was provided and it looks like you can do a 10 minute call at no charge with the doctor.  I will take him up on that.

Everything I've read and tests so far lead me to believe I do not have high flow priapism. Nonetheless, I am open to anything and everything.

Thanks again.  

[Pfract]

Nice. Please reach back to me next week, just in case I forget. Definitely schedule the courtesy call. He really talks to you 10 minutes on the phone, and you can have a better and idea and then decide to go there or not. I fully recommend it because he does all of the most advanced tests on his practice.

-ultrasound color with injection for erection and tablet so you can stimulate yourself seeing porn
-penile mri and cavernosography
-several blood flow and venous tests

You can get a much more accurate diagnostic there and take it from there, instead of going from doctor to doctor. Look online for his resume and be amazed.

[Kickit40]

I have scheduled a call with the Dr Irwin Goldstein in about three weeks.

Thanks again for the reference.

[Pfract]

Best of luck. Please report back!  

[Kickit40]

@pfract

I had a call with Dr. Goldstein earlier this week and he recommended coming in for a visit:

PLAN
Serum thyroid stimulating hormone (TSH)
Serum follicle stimulating hormone (FSH)
Serum dihydrotestosterone level
Serum estradiol level
Postpubertal male serum LH level
Serum prolactin level
Serum SHBG level
Total plasma testosterone level
Prostate-specific antigen in serum
A Doppler duplex color-flow ultrasound
Injection for Peyronie disease

I am not familiar with everything listed but seems like a lot of testing.

How was your experience with Dr. Goldstein?

Thanks.

[Hawk]

You should have a thorough and interesting visit once all the test results are in.  Please keep us updated.

Take notes, or better yet, if you have a confidante, take them along to quietly take notes while you talk and ask questions.

Good luck

[Kickit40]

In talking with the clinic, here is the plan for the two days they want me there:

Day 1:   
Description:                                  Cost:
New patient office visit                  $635
Penile ultrasound                         $525
Pharmaceutical erection injection         $90
Phenylephrine                                 $55
Peyronies injection                         $310 or $440
Interferon                                         $110
Xiaflex                                         $3,900
Physical therapy evaluation                 $200*
   
Day 2:   
Description:                                Cost:
Peyronies injection                        $310 or $440
Interferon                                        $110
Xiaflex                                        $3,900

The part I am confused on is that I haven't even been diagnosed with Peyriones and one visit will costs me $10k.

I am looking for others opinions on this plan from the doc.

Perhaps my best next step is a doppler from a local doc around me.

Thanks for your opinions.

[Hawk]

I hope insurance is covering this or that you are wealthy.  

If you stated your age I missed it.  You should go to profile and fill out your signature line so less time is wasted asking and answering basic questions like age etc.

Read the first post in this topic. https://www.peyroniesforum.net/index.php/topic,10819.0.html

[TonySa]

The costs seem quite extreme to me. Insurance isn't an option?  Insurance tends to only pay 30-50% of their private pay rates-do if you're cash don't be afraid to negotiate the costs.

[Wethenorth]

I'd love to know what a "Peyronie injection" is. OP did the doctor tell you what this was?

[diehardpatriot]

Lol these chumps profit on our desperation. Charging crazy rates  

[pey ron]

I'd choose carefully based on the cure that the doctor typically recommends. I wouldn't pay 10k for a visit by a doctor whose approach I don't like...

[Kickit40]

I am not going to see the doctor.  

First, I feel like they are throwing the kitchen sink at me without a diagnoses.  Second, I am not even sure I have Peyrione's.  I am looking for a solid diagnoses from a doctor.

I am working on getting a CT scan and doppler as my next steps.

[Hawk]

We are so glad you found the forum and introduced yourself.  
Since you reached the 10 post limit for the Introduction Board It is now time to start posting in the main forums that are divided into Boards based on different subjects.

As an introductory topic, this topic is locked since it reached more than the 10 post limit exclusive to the Introduction Board.
Please continue the conversation on the appropriate boards on the forum.

Thanks
Hawk