Welcome to the Peyronies Forum

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Introduce Yourself / Re: Introducing myself
Last post by Mikel7 - Today at 06:06:38 AM
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  :)
Restorex does work and you need to be using the makeup pads to hold your glans more securely and comfortably -->Makeup Pads . Read up on it and you can purchase them on Amazon.
Xiaflex Injections / Re: Logistics of Seeing Dr. Tr...
Last post by MRowdy - Yesterday at 07:08:10 PM
Thank you for posting your experience with Dr Trost.  Have your excellent results been maintained since the injections 6 months ago?  How long did you need to wait to get into see him? Thanks
Introduce Yourself / Re: Introducing myself
Last post by Sonic - Yesterday at 02:33:33 PM
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.
Introduce Yourself / Introducing myself
Last post by MRowdy - Yesterday at 02:30:10 PM
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.
A week and a half in.  Maybe it's wishful thinking, but I think I see a very slight improvement in both length and curvature.  I'm having some issues with the clamp holding.  I bought a bunch of tape to wrap the glans, but it seems to always slip out very gradually and after a few minutes I have to fix it.  The brand I have feels just a tiny bit waxy, so perhaps not the best.  Can anyone recommend a good brand?  And the source for that brand.
Surgery for Peyronie's Disease / Re: Post surgery help
Last post by Pfract - Yesterday at 09:49:07 AM
I am not sure about this, but at this point s would suggest you wait another 3 weeks to fullyI heal from the surgery. Doctors also recommend normally traction post surgery to help with the penis not retracting so much. Where you given any post op instructions?
Introduce Yourself / Re: Hi new here
Last post by Pfract - Yesterday at 09:43:59 AM
Surprised to hear your doctors say that traction would be of no benefit. But since you are having surgery, then at this point I wish you good luck. Hopefully your curvature will be fixed and there will be no changes to your erectile function.
Quote from: Pfract on September 19, 2023, 10:15:17 PMHey Kelis:

Given all that you describe, the best thing you can do is try to find a sexual medicine specialist that you can work with and that can start by making a full diagnosis of your condition. You know that you are already suffering from Erectile Dysfunction, but to what extent? Have you tried medication to help out with Erectile Dysfunction? How bad was your fracture? If the curve isn't too severe and the size loss wasn't great, you may still attempt to have sex with the help of pills and/or a constriction ring to achieve successful penetration.

If you are not comfortable with those or you don't wish to proceed down this route then you may be suited for a Penile implant sooner rather than later.

But that requires a lot of research and depends on a lot of factors on your end too. So tell us more about your plans and what do you want to do in the future about your condition. (an implant would solve the problem with the muscle you describe, by the way..)

Good evening and sorry for the dare. I tried to send you a PM but unfortunately your PM is full. I would like if you would like to have a personal discussion about the fracture case that he recently underwent surgery within 24 hours. I'm not ready to discuss it publicly yet because it's too recent. I will definitely do so in the future. Thank you very much... and I look forward to hearing from you
You have already gotten some great advice from all the people above. Very nice posts from all. I can only say the fact that he became angry when you tried talking about it the last time shows that something is not right within him. I suspect it's due to the frustration that this disease gives us men. However I do think it is very important from his part to be able to calm down and have a proper discussion about it and get everything off his chest. It is never good to hold these things in. At least I would never do that but everyone is different.

I hope your relationship improves.