Introducing myself

[MRowdy]

I'm 55, been married for 31 years and own my own business.  I am active, drink very little and smoke once a day in the evening after dinner. And have a decent diet mainly to manage Diverticulitis.  I live in a semi-rural market with no top flight Urologists.  I do have good insurance.  I don't know my curvature but it's significant (maybe 35-40%).  I have a good sex life with my wife but it's changed especially penetration.  She's very supportive but I don't want this to be as good as it gets.  I think I have probably lost a little but not much length.

Peyronies Disease first showed up for me about 3-4 years ago.   I noticed an indentation on the lower right side of my penis when erect.  No pain.  I called a doctor friend of mine and he referred me to a local Urologist who examined me, found some plaque and diagnosed Peyronies Disease.  He recommended Restorex, Pentox and CoQ10.  It worked and the dent went away entirely.

About 8-9 months ago, I noticed a slight curve at the top of my penis showing up and could feel a pea-sized lump (there now seem to be two lumps) below the glans.  The curve wasn't bad and my erectile function was excellent.  I contacted the same Urologist and he recommended the same course of treatment which I followed but, I have to admit, without the same discipline as I had the first time.  About four months ago, I noticed that I was developing an upward curve and painful erections. It really messed with my head for about a week until I realized to keep it in perspective.  

I went back to Urologist and asked him about more treatment options and he mentioned Xiaflex and surgery.  I resisted and started looking for alternative methods like PRP, Li-ESWT, Holistic Medicine and Acupuncture to add to my plan. In the meantime, I have been diligent with Restorex twice a day for 30 minutes and the oral stuff Sildenafil (20 mg daily), Vitamin E, CoQ10, Pentox.  I have done a couple of pricey PRP shots and added VED twice a day, decided against the Shockwave and have noticed no improvement.  

I'm trying to stick with the "a marathon not a sprint" mentality but it's frustrating not to see improvement.  I don't have a ton of faith in my Urologist.  He's a nice guy but he's dismissive of anything outside of pharmaceuticals, scalpels or Xiaflex (which he says "isn't good enough"). Seems like there guys who have success with the types of treatment I've been doing but how long do I stay patient with what I'm doing?  

I'm re-evaluating my plan and would love to hear from others with experience.  I have a lot of questions.  It seems like the first thing I need to do is go in and get a baseline. Is that called a Duplex ultrasound?

How do I know if I'm in acute or chronic stage?
Is there bloodwork that is a must-do?
Should I ramp up my cardio?
Start an anti-inflammatory diet?
Which Urologists are best Peyronie's experts nationally?
Can I start online or over the phone with them for an initial consult?

It's a minefield of information and misinformation out there.  I'm glad I found this place.
 

[Sonic]

Real mysterious disease, so, so sad that it can reactivate. It is very good that the indentation on the right side vanished but that you got a new curve/plaque in a whole new spot is sad. I would recommend Dr Landon. Trost.

[Mikel7]

Welcome to the forum MRowdy. I'm sorry to hear about your situation and what Sonic has stated is true. Peyronies is a mysterious disease and what has reactivated yours you may never know.

Inflammation doe splay a role in it. Healthy lifestyle changes do also help in many ways. Supplements contribute your overall health in general but no one really knows if it treats peyroneis. I would keep taking the sildenafil. The only blood work you could do is to see where your internal inflammation markers are. This would only give you an idea of how your body is reacting to things.

I would stay with the Restorex and if you are seeking a Dr to perform the Xiaflex injections I would steer you in the direction of Dr Trost. He has developed his own protocol for utilizing this drug and in my opinion is the top expert in administering it. I also think that he does virtual consults. I would look to him if this is what you are thinking about,

Keep the mindset that this can take some time and more time.....You have had some success in your past with this and perhaps you will again. Don't despair but be thankful that you are in a large community of men who have all gone down this road. We have the experience and knowledge to share with you and others regarding this awful disease. Stay the course..

Mikel7  

[Pfract]

Hey Mrowdy! Welcome aboard. You seem to have already done some research and that is good. Some of the treatments You tried are known to have limited (if any) effect, but it doesn't hurt to try and at least you know that you have explored those avenues.

Restorex and VED have proven to be successful in helping several members on this forum and some of them have documented their progress with pictures. It can be hard to find the threads but the user ''Monty'' was one of them.

When it comes to doctors and online consultations, please reach out to Dr Landon Trost.
https://malefertilityandpeyroniesclinic.com/

He does video consultations and offers virtual treatment to patients in select states. If yours is not covered, chances are you will be able to fly in and see him. He is an expert on administering Xiaflex and dealing with peyronies as well as being up to date on the latest treatments for this disease.

When it comes to know which stage you are at and what is recommended, please start here.
https://malefertilityandpeyroniesclinic.com/peyronies/treatments/

Please stay With us.

 

[MRFOOTBALL101]

I had the surgery and implant and they cleaned out all the plaque as well and patched me up.It caused my divorce but I'm happy I got rid of all the plaque and have a implant

[MRowdy]

Mikel7 and Pfract,
Thank you for welcoming me and providing some suggestions.  I took your advice and have a consultation with Dr. Trost on October 24. I had not been seriously considering Xiaflex until I read some men's experience and success on this board. I'm curious about the the sequence with VED and PTT. Is it better to follow traction with VED or vice versa and should they be spaced out?

[Pfract]

You are welcome. I hope he gives you the guidance that you need to go forward with confidence.

Some members do them both at the same time, others go through stints of either one. It would be up to you and the time that you have to pursue both treatments.  

[Mikel7]

Dr Trost is a very kind and gentle soul. He is skilled and knowledgeable in what he does. Hopefully you will find some clear direction in your case.  

[this_day]

How long did you use Restorex the first time when you said the lump went away in 2019?

The ultrasound seems to be a good starting point this time around.  Hope everything goes well.

[MRowdy]

It was a long time ago but I'm pretty sure I used Restorex for about 6-9 months.

I had my first two rounds of Xiaflex with Dr Trost three weeks ago.