Just venting: Feeling unheard by urologists

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thejoshua

Hi all-
I'm just a few weeks into diagnosis, but I suspect this has been developing for a while. Noticed shortening over the last year that I attributed to weight gain, but now am certain it was part of the Peyronies development.

At any rate, I live in a major city but can't seem to find a Peyronie's specialist. The doc that diagnosed me was a Physicians Assistant who basically prescribed verapamil ointment from PDLabs, along with 2.5 MG of Tadalafil daily. . . and that was her plan. "Wait a year and come back." Well, that's not entirely true. . . she did try to sell me $5k worth of shockwave treatments, which so far I have not decided to proceed with after reading results from other forum members.

After tons of reading here on the forum (and getting started on the Survival Guide regime of supplements), I found a urologist in town with a website that discussed conservative treatment options like traction and VED. Since my curvature is just developing and is mild at this stage, I decided that sounded like the approach I wanted to try, so I scheduled an appointment (not in my insurance network, so close to $300 out of pocket).

Went to the appt. yesterday and the doc did a manual exam to confirm plaque, told me I had a very "soft" penis, then left the room and sent his nurse back in with a video for me to watch that was produced by Xiaflex. Basically, the entire education this doctor gives his patients about Peyronie's is through a video produced by the pharmaceutical company. I have nothing against Xiaflex. . . but even the video said Xiaflex is recommended for patients with at least a 30 degree curvature, which I have not yet developed. When he returned to the room and asked if I had any questions, I asked why he recommended Xiaflex if I didn't have a 30 degree curvature. He said if I wanted, he could "fudge" my curvature measurements in the system so we could get the Xiaflex treatments approved by insurance. I kindly refused (insurance fraud), and asked him about traction and VED and the things on his website that made me come to him in the first place. He said "I think those probably cause more harm than good" and then tried to sell me again on Xiaflex, shockwave, and PRP injections.

I'm not saying those things don't work. Maybe they do. It seems that both docs I visited were more interested in selling me a recurring regime of injections or treatments than they were in considering the treatment options I am interested in.

Frustrated, wanted to find a doctor that made me feel a bit more heard and less alone in this. But I think I will take a break from doctors - just bought a VED earlier this week and ordered Restorex tonight. Will use that in combo with my supplements and see what progress I can make on my own I suppose!

Hope everyone reading is doing well tonight.  
Married, 44 years old
Diagnosed in July 2022
In acute phase feeling pain
Upward curvature forming near glans
L-arginine, L-acetyl Carnitine, Ubiquinol, Vitamin E
Started VED and Restorex 8/22

Mikel7

Welcome Thejoshua to the forum. Thank you for filling out your signature line as you will get a better member response to your questions. Also the survival guide will be your best source for information regarding peyronies. A lot of Dr's are clueless about it and finding a peyronies Dr can be frustrating. You should keep searching for one. Are you close to Chicago?  Dr Levine is an excellent urologist and a peyronies specialist too. Dr Trost is in Utah if you are close to him as he is also an excellent peyronies Dr.

Starting VED and traction early can prevent shortening and loss of size and possibly help you regain back what was lost. Weight gain is famous for "shrinking" your penis because of the added fat layer. Tadalafil will help with erections and bringing in fresh oxygenated blood as help cut down on inflammation. I know that Xiaflex is the go to now medication/treatment plan that is being more visibly seen through commercials and such. It does have it's place though for some individuals. This is something you should first read up on in this forum from on hand experiences. Some men benefit and others do not. It is also very expensive as you may well know. I would never recommend shock wave as this has not been peer reviewed and studied/proven. It too is a lot of money.

I would say you have a good knowledge base already regarding what you want to do. Investing in Restorex and a VED device is a first start. Also Dr Trost who was the inventor of the Restorex device is a moderator here who answers our members questions. He is also a very genuine caring Dr which by the way is hard to find. Keep reading up and keep a level head about peyronies. You must finally remeber that this takes time to treat. It is a marathon and not a sprint.  :)  Mikel7




 
Lump 4/2020, age 62 , Dr Levine 6-26-20, Dors Curve 11/2020, Peyronies
Vit E400mg, COQ10, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
SNHL 7/2020 - Stopped all Meds because ototoxicity  Heat/traction/VED are working. CPPS Diagnosis - Stable :)

nemo

Any urologist who's recommending Topical Verapamil or PRP injections for Peyronies Disease should see nothing but the backside of you, walking out the door. That's just sad. TV was recognized to be worthless many years ago when Levine did a study showing it doesn't penetrate to the tunica, and PRP has never been anything more than snake oil pedaled by questionable practitioners.

I'm sorry you had to deal with this.

nemo

51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

Bud luck

I did the PRP injections and that was a huge mistake, it made my penis worse, it caused more narrowing, more lateral deviation and worse ED. I wonder if traction is beneficial or not? Same with the VED
My first symptoms started early in 2019
I tried Traction device, Pentofixiline, Q10, TRT, L-Argenine, cialis
I have narrowing/dent/hinge on the left side of my shaft
My ED is getting worse
Had a PRP shot Aug 2021
I have a girlfriend
Age 46

thejoshua

I'm really glad I found this forum so early in my diagnosis, it's helped me establish my protocol of supplements and research some of my decisions around traction and VED. It's also introduced the "marathon, not a race" philosophy to me across many threads, which I can see will be very important to me in the coming years since this isn't a "quick fix" or even a "fix" sort of disease.

Since I live in Texas, I'm not very close in proximity to the esteemed doctors in Chicago or Utah. Oddly, I can't seem to find many highly recommended Pyeronie's doctors (for anything other than surgery) in this big state. I have not ruled out making a trip to see a top specialist out of state, but my insurance won't cover doctors outside of a very small network in my city, so I'm leaning towards learning and trying a few approaches and carefully monitoring my progression to start.

I think what I was looking for in a doctor was just somebody who would help track progress against the things we try, who was open to seeing what worked for my unique body, and who made me feel like I had a practitioner who cared. I did not get that feeling from either urologist I spent my money with. Neither of them gave me an answer at all regarding possible treatments for my Peyronie's pain, which right now is primarily during erections and makes sexual activity virtually impossible.

BTW, I also noticed that I probably should have posted this in the forum category around doctors. I looked high and low for that category when I was posting and just kept missing it, so I posted here, and then after I posted, found that category again. My apologies for misplacing this post, I will be more careful in future posts.

Grateful for your responses above. Happy Friday.

Married, 44 years old
Diagnosed in July 2022
In acute phase feeling pain
Upward curvature forming near glans
L-arginine, L-acetyl Carnitine, Ubiquinol, Vitamin E
Started VED and Restorex 8/22

FrankPD

My second opinion uro tried to sell me $1800 worth of shockwave therapy and I said no since a lot of forum members were against it.

Glad I found this place.

Best to all.
I have a girlfriend
Age 47, No injury
Diagnosis January 2022  
Six plaques
Hourglassing when flaccid and semi-erect
Only have my congenital curve
Massaging with vitamin E cream twice a day 
5mg Tadalafil, Healthy diet
Discomfort/aching sometimes