Summarizing the last 4 months with peyronies

[alec]

Hi, everyone  

I have been around here for some weeks now. Some of you may have read my posts. But I've never introduced myself properly. So I think it's time to admit I am going to be around for some more time. I will try to summarize what has happened so far:

Introduction, symptoms and health care odyssey:
I am 28 years old and from Austria (Europe). I noticed the first symptoms: a 20° curve to the right and indentation on the shaft in February 2018. The indentation is on the right side in the middle of the shaft and approximately 0.5 inches deep. It looks like a piece of my penis is missing. It seems logical to me that this is caused by the tissue that won't stretch and blood can not fil properly. From this indentation, a curve starts to develop to the right at an angle of 20 degrees.

I went to two Urologists, one general practitioner and three Peyronies specialists. I medicated myself after reading about Pentox and Cialis here because all the doctors would just tell me to wait. I documented the degree of curvation with photos along the way and after three months there was no change in the curvation or indentation. But some pain appeared in my testicles and lower body, which was diagnosed as back pain. But today I would say it is psychological pain or tension, which is coming and going as it pleases.

What I've done to treat this, but stopped because I felt it wouldn't change anything and just cost money:

• daily L-arginine
• daily L-carnitine
• daily 1 x 5000IE Vitamin-D
• daily 1 x 400mg Vitamin-E
• daily 1 x 600mg acetylcysteine
• using the Phallosan Forte traction device as often as possible, never more than 1 hour
• topical Coconut oil
• topical Diclofenac creme
• topical Vitamin-E
• topical Zinc creme

What I'm still doing to treat this and try to continue for the next 6-12 months:

• daily 4 x 3mg Potassium 4-aminobenzoate (Potaba-Glenwood Powder)
• daily 3 x 400mg Pentoxifylline (Pentoxi Genericon retard)
• daily 1 x 5mg Tadalafil (Cialis)
• following my own VED (SomaCorrect) protocol as often as I am home in the morning or evening for 10 minutes going
• daily manual stretching as often as I am in the shower, toilet or bed for 30 seconds each time
• 2 x 20min of Iontophoresis with Dexamethasone, Verapamil and Lidocaine
• weekly psychotherapy
• sports activities as often as possible
• eat fresh, low carbs, low sugar

What I am going to do to treat this in the future:

• 8 x 20min of Iontophoresis with Dexamethasone, Verapamil and Lidocaine
• at least 2 cycles with 2 injections of Xiaflex each
• maybe start using the Phallosan Forte again after Xiaflex
• more appointments with other Peyronie experts
• flying to the US to get H-100 and RestoreX
• make a blood test for manganese, zinc, iron and copper
• finding a urologist that offers extracorporeal shockwave therapy (ESWT)
• stop drinking alcohol or at least reduce it to one time in the week
• getting in touch with others who fight this disease in person
• limit forum use and internet research to two days a week

If you have any suggestions or questions, do not hesitate to ask!

The last months have been a nightmare. Mostly because I do not feel confident about talking to friends about this. This forum helped me a lot to figure out what to do, keep some hope up and not to feel all alone in this. I am not in a relationship and I decided this is not the time to be in one. I do not masturbate or only with a lot of lube. I am really afraid of a progressive course since I've read that it can worsen and doctors told me "I would have this Disease for the rest of my life". It has been a great challenge to tackle this mentally! And for now, I feel lucky that nothing got worse yet. I refuse to give up and accept this as it is. I will fight this, I will try everything there is. Even if it costs time and money. I am positive that we can do this together.

I am looking forward to getting to know more of you and I am already so thankful for the great advice and emotional support so far.

Thanks for sharing your story! Keep it up!

[Vvv]

Have you noticed any improvements with phallosan forte? You only use it one hour a day? Or do you use it 1 hour, take a break and use it again 1 hour?

[alec]

@Vvv

I bought it because it was recommended by a Peyronies expert and on the forum. But I was really uncomfortable wearing it. In my case: It just seems to pull on the penile skin on the outside and my penile glance got blue fast. One time I clamped my penile skin. I never wore it for more than an hour a day, maybe for 2 weeks or less. I did not notice any change and I think today that I can achieve better results with manual stretching.

I will try again when I did Xiaflex.  

[hope794]

Dear Alexander,
as you've probably understood you're one of my favourite forum users, because you are similiar to me: you just don't sit and get depressed, but you're trying to do literally all you can to improve your situation; i really appreciate this.

I have some questions for you:

1. did you have any improvement?
2. if yes, what do you think that helped you the most?
3. why don't you use a VED? I just started 1 week ago to use a Water VED (i can give you the name if you want) and it helped me SO MUCH with my erections. I am not lying when i say that, with only 1 week of water VED used correctly, my erection got at least 30% better. Not joking . I only hope that my improvement are long-term. BTW even if you haven't got ED, VED is really helpful for blood flow.
4. Are you planning to try stem cell treatment?

Advice: i heard about serrapeptase + nattokinase. Some people on the net said that it helped a lot with fibrosis-related health issues. What do you think about it?

[alec]

@hope794

I am glad that you follow my posts and share your story here. It really helps me to read about others too. I will try to answer your questions:

1) I did not see any improvements. Nor did I see any changes at all - for good or for bad. But I tell myself this is going to be a long shot. If acute phase can take up to 18 months. I consider this the amount of time I will give myself to try everything and than resume afterwards!

3) I think there is a misunderstanding. I try to use the VED (SomaCorrect) daily for 10-15 minutes. But often I am not home so I could not be so consistent.

4) I have not gathered enough information about stem cell therapy, but I will soon. For now, I am preparing for Xiaflex treatment in less than three weeks.

I will look into serrapeptase + nattokinase. Thank you!

[hope794]

Thx for answers! Look here:

HYPERTHERMIA - Infrared light and Heating therapy - Peyronies Society Forums [Page 2]

i opened a topic some minutes ago to gater more infos.

[MacMathuna]

Any improvement now?

[melting]

That sounded like a good focused plan.
Consistency is key with Peyronies Disease.

[projectpd]

Alexander88, I'm also interested in iontophoresis of dexamethasone. But, are you planning using the cathode or anode for it?   The studies on it I could find, if they mentioned it , stated using the anode for the active electrode, but dex in dex phosphate is supposed to be negatively charged, so the cathode should be used:
"Dexamethasone sodium phosphate (DEX-P) is the form of DEX utilized with iontophoresis. DEX-P ionizes into a negatively charged ion and, therefore, should be placed under the cathode"
https://www.jospt.org/doi/pdf/10.2519/jospt.2008.2648
thanks!

[projectpd]

there is some more info here (perhaps either can be effective) https://www.sciencedirect.com/science/article/abs/pii/016836599290139I