New Here....

[Whiskers]

It's really good to find a site like this and realize that you are not alone.. I have peyronie like everyone else here and mind started in  November 2011. I have been to several  GPs and been to an urologist and it feels they have given up on me,.. for they have not given me any true help of suggesting treatment apart from vitamin help....

I don't know what to do Now to get things working for the better...

thanks

[Jonbinspain]

You should start by reading all the information you can on this site. Like you, I have received virtually no useful medical help, here in Spain. In my opinion, you will get more useful information here than you will from most of the medical profession.
I'm fairly new to this myself, and there is no guaranteed cure for this problem. What works for one, may not work for another. However, certain treatments such as Pentoxiffyline seem to be generally accepted as being in the first line of the battle.
Good luck, and I hope you find some useful information here.

[james1947]

whiskers6971

Jonbinspain answer is a good one. Read the forum to understand this disease. Have here accumulated knowledge that not to many doctors are even close to that.
My daily treatment is:
3*400mg Pentox (Trental), if too much side effects 2*400mg.
4mg Cialis (cutting the 20mg in 5 pcs)
2*500mg Acetyl L-Carnitine will increase soon to 3*500mg
2*1000mg L-Arginine
3*100mg Ubiquinol, ( if younger than 40 may use 3*100mg CoQ10, much cheaper)
VED, 20 minutes
With his treatment (like all the others except surgery) you can expect improvements after six months or more, some people have faster improvement. Consistency is the key of this treatment.

James

[MattFoley]

I just posted this for someone else so I hope it's OK that I post it again here:

I put a great deal of emphasis on the idea that testosterone plays a significant role in Peyronie's. From what I've gathered regarding my own personal Peyronie's nightmare, the drop in my testosterone levels precipitated the Peyronie's and ED.

I point to this as further support of my position:

http://www.ncbi.nlm.nih.gov/pubmed/19473459

My recommendation would be to get a full blood work done especially identifying testosterone levels. If the results are that your testosterone level is below what is considered the 95% percentile, you should consider begging the doctor to put you on testosterone replacement and possibly Clomid and Anastrozole to bring down estrogen levels.

In the meantime, it can't hurt to add things like the following to help raise testosterone and nitric oxide levels (improve blood flow):

Horny Goat Weed Complex -- 1200 mg
Korean Ginseng Extended Release -- 1000 mg
GPLC Glycine Propionyl L-Carnitine HCl-GlycoCarn 1000 mg PLC per serving
Long Jack PowerMax 200 -- 200 mg
Solaray Damiana Leaves -- 370 mg
Solaray Fenugreek Extract -- 350 mg
Forskolin 50
Maca Extract -- 525 mg
AAKG 3000 L-Arginine Alpha-Ketoglutarate Powder -- 3000 mg per serving
ALCAR Acetyl L-Carnitine -- 500-1,000 mg/day
Pycnogenol® -- 100 mg
Mega EFA® Omega-3 EPA & DHA Fish Oil -- 2,126 mg per serving
Muira Puama Bark
Zinc -- 50 mg
Citrulline Malate -- 2000 mg
Vitamin E d-Alpha And Mixed Tocopherols -- 400 IU
Gotu Kola -- 950 mg per serving
Ubiquinol -- 100 mg. 3x/day
Tribulus Terrestris -- 1,000 mg
D-Aspartic Acid -- 5 g


One thing's for certain, these supplements will likely raise your libido. I know mine went through the roof even without the testosterone replacement. Now it's worse. Much, much worse.

Good luck and God bless.

[Hawk]

Please don't read this as discounting MattFoley's regimen. I put some value in most of those things.  In fact there are only 3 things on that list that I have not taken.  However, for those that feel overwhelmed with sorting through and taking so many supplements, or who for those that have limited financial resources, I would emphasize the list James provided as the best start and the most bang for your buck and for your time.  IMHO no new Peyronies Disease patient should overlook the oral treatments on that list.

I will also always warn those considering testosterone replacement to make sure you are thoroughly evaluated for prostate cancer prior to any testosterone replacement.  You should also stay vigilant with a PSA and a digital exam at least yearly while on testosterone replacement. I think the recommendation for testosterone replacement has to always include this basic advice.  Many doctors can be cavalier about such things just as they can be with Peyronies Disease.  Furthermore many people access products on the internet with little or no medical supervision and lives depend on this issue.

Hawk

[swolf]

MattFoley has a good list but it's also very easy to over-supplement and cause yourself problems via that. Horny goat weed and Damiana in particular I think are best used in short-term phases; Horny goat weed maybe even just as an aphrodisiac.  

[MattFoley]

I echo everything that swolf and Hawk stated.

Yes, the list james1947 provided is the essential group.

Yes, you need to cycle some of those supplements in order to retain efficacy.

Yes, you need to have your prostate checked regularly and any testosterone replacement (should it be necessary) must be done in coordination with appropriate blood work.

Whatever direction you choose, you must be vigilant, stay positive, and educate yourself from the information available through this forum and supporting links so that if your urologist tells you something that is clearly idiotic, you can call him on it.