My Introduction and request for advice

[LeeBee69]

Dear all,

This is my introduction email. I'm asking for any and all advice. I've reviewed many posts on the forum but haven't scratched the surface of this incredible resource and am still learning.

I am T2 Diabetic for the last 11 years which is controlled to the point of it not being detectable by blood tests with a Ketogenic diet. This does however give me a genetic propensity to fibrotic conditions. As well as Peyronnie's I have the beginnings of Dupytren's and Plantar Fibromatosis. My systemic inflammation markers - homocysteine and CRP are good. I have been suffering GI issues and dizziness and countless colds and flus. I did move from the UK to Australia and so you can expect this however my immune system does seem to be compromised. I'm working with a great Integrative Health Practitioner (she's a medical doctor) on the GI issues. I'll know more about that this week. I have been suffering chronic stress from work and a relationship break up. I do not smoke, I drink moderately with the occasional excess, which yes I know I shouldn't but I do, I guess I control my diet and lifestyle so carefully that the odd excess creeps in. By that I mean drinking a bottle of wine on a Friday night once a month, not a bottle of whisky once a week!

I discovered the pea size plaque May 2015. I left it for around 6 months, thinking it was gristle or some such material that would clear away. Then it grew larger and I researched it and realised it was Peyronnie's. I saw a doctor that specialises in Men's sexual health end of last year. At first he said come back in couple months and we'll look at it again. I would have had a 10 - 20 deg curve at that point. As of Feb/March this year he put me on Trental. I took it for a couple of months with increasing curvature and developed hour glassing on the left side. I stopped the Trental for a couple of months due to the GI issues - to see if the Trental was causing them and as my immune system was in a terrible state - I have had nearly double figures colds this season (I'm in the antipodes). I'm not 100% it wasn't causing some of the systems, like terrible diarrhoea but certainly not all of them as other symptoms persisted. I also went on a FODMAP diet at that time so introduced two variables at once, poor scientific method

In the course of this year my curvature has progressed to 65-70% dorsal curvature, hinged, and hour glassing beginning on the right hand side, one or two plaques in the centre of the penis. No ED at all at this point. Very little to no pain.

At my recent visit to the Doc he has put me on Viagra and encouraged me to get back on the Trental which I will. He wants me to see a Uro in a few months. His view is that it has yet to stabilise and we need to wait for that before following other routes. My assumption is he does not believe I have reached the chronic stage and am still in acute and does not want to do anything to worsen the issue whilst acute. At 70% curvature I'm questioning this approach.

I take Vitamin E, I stopped Acetyl-L-Carnatine (it didn't seem to help).

Psychologically I am ok to good. Having dealt with another chronic disease I know that perseverance, patience and taking your health into your own hands can pay off, but yes it gets me down and am now that I am not in a relationship I know I will have to broach this with anyone I meet.

From reading some of this forum I am now thinking I need to design my own protocol and not wait for the chronic phase, which most likely is not too far off anyway.

To this end I have ordered a Penismaster Pro with the belt add-on and will start traction - starting slowly and building to >3hrs per day. The research shows it's best in acute phase, I wish I had started it sooner! This is of course contrary to the medical advice I have been give to date.
Having done more research I will be starting L-Argine.
I'll continue with Trental and Viagra and Vitamin E.
I will most likely add VED, warming & massage.

This plan is mostly based off of this freely available paper: Therapeutic advances in the treatment of Peyronie's disease - Yafi - 2015 - Andrology - Wiley Online Library and forum member posts.

I have been looking into and trying out near infrared and PEMF - I need to do more research on PEMF, but believe this could promote a restoration of normal cellular function & stimulate stem cells. Near infrared has been shown to dramatically improve wound healing. I see these last 2 as supportive of the remodelling process and helping prevent against further scarring.

The calcium channel blocker topical delivery is very interesting. As posted in here: New Study: Review of Treatment Options for Peyronie's Disease (by Levine) - Peyronies Society Forums.

I'm realistic that without surgery I may never be straight again coming from 70%. I would be happy with a bend that allowed for a decent sex life.

What do folks think about my plan and my medical advice to date?

Thanks to all of you have contributed here to date and thanks for all future help you may provide me. I hope I can do the same for you all.

Lastly...I am glad to see that the medical community around Peyronie's is looking at multimodal/combination therapy...but it is limited to date. AIDS research was going nowhere as the drug companies would test one drug at a time, the FDA would approve one at at time and on and on. gay men began mixing drugs essentially creating their own combination therapies. They found certain combinations worked and went back to the medical community and demanded they evaluate what they had discovered. I can see that approach happening here with the support of a great community.

Best,
LeeBee

[Jonbinspain]

Yes, diabetes is often a cause of Peyronies.

Your Peyronies seems to be particularly aggressive in it's  advancement. And a 70deg curve is pretty bad.

It's difficult to know what more to suggest that you haven't tried. I would certainly as your Uro for daily low dose Cialis. It stays active far longer than viagra.

Healthy Blood flow is vital. I would suggest taking ALC along with citrulline malate, both are available in powder form and dissolve easily in water.

Traction certainly. And I would look,st the section on VED.

Apart from surgery, you may want to investigate Xiaflex.