Any Advice?

[speechless]

Hi All. I'm 32,only been married 2 years and found out I have Peyronies. I don't even know where to start. Any advice would be much appreciated. such as things I can do or take to help reduce the effects. What Do I Do now??

[Jonbinspain]

Hi All. I'm 32,only been married 2 years and found out I have Peyronies. I don't even know where to start. Any advice would be much appreciated. such as things I can do or take to help reduce the effects. What Do I Do now??

Firstly, are you sure it's Peyronies's? Have you been diagnosed?  If not, get one. If it is Peyronie's, see a good urologist ASAP. Most of the supplements, remedies, etc, you will find on this forum. Be aware that what may work for one person does not work work another. And vice versa.

[james1947]

speachless

Can you give us some more details regarding your Peyronies?
Like what are the symptoms, how you was diagnosed, what you have done until now to treat this disease?

Welcome to the forum
James

PS: I have split your post to a new topic that you can have your own and people can answer to you directly.

[speechless]

I Was was just diagnosed last week with Peyronies and am pretty scared and worried. I had noticed a lump and a slight curve in my penis about 6 months prior but was having no pain or erectile problems. I just figured that this could happen since I was just married 2 years ago and I wasn't sexually active before. One day my wife and I were trying to make a baby and my penis when erect was all of a sudden extremely painfull. I am also not able to achieve a full erection and only stay erect for maybe 5 minutes. That's when i decided to go to the DR. The symptoms i am having are extreme pain during an erection, tenderness when soft and pain always between my legs in the perineum area. It feels like a stick is being pushed up through the perineum up into my stomach. The Dr told me that I had peyronies but didn't have any ideas of what could be done to help it other than surgery, for me that is the LAST resort. He did put me on an antibiotic for possible Prostatitis, but no relief so far. So that is why I am here, to see what others have tried and were successful with and to possibly find a Doctor that actually knows what he's talking about and could help me out. I live in Utah but am willing to travel anywhere in the US to get help. I am also here for my mental well being. I am having a really hard time dealing with this and i hope talking about it with others going through the same thing will help me get through. Thank you for anything that could be passed my way!

[speechless]

I forgot to mention that the doctor I went to was a Urologist.

[funnyfarm]

"It feels like a stick is being pushed up through the perineum up into my stomach"

I have had this too due to prostatitis (prostate is inflamed but not enlarged, and also leads to inflammation of the bladder-feels like stomach pain)  If its not an infection, though, the doctors will just tell you to go home and wait.  I have had this for years, to varying degrees.   I think it is worse than peyronies in the sense that there is no treatment and very little in terms support or information on the internet.  

Aside from watching my diet (no spicy foods) one thing that does help is applying coconut oil to the rectal/perennial area.   It is no cure but reduces inflammation in the area from its cooling effect.  My ayurvedic doctor suggested this and also castor oil (too sticky/messy in my opinion).

Also I find it is best not to sit for long periods.  I have not been able to find a doctor that knows how to treat this unfortunately.

[Hawk]

Speechless,

You don't mention your age, or how long the since the pain first set in.  Also, do you have any penis pain and do your classic Peyronies Disease symptoms (bend, dents, size reduction) seem to be advancing?  What degree of bend/curve would you estimate at this time? Do you recall any injury during sex or at any other time?

The pain in your perennial area is not typical of Peyronies Disease.  there is however a large portion of penis including erectile tissue that extends into the body behind the scrotum so  theoretically you could develop Peyronies Disease plaque in that area.  In almost a decade I have never heard that topic adequately discussed.  

Did your doctor suggest any treatment or show any real interest in Peyronies Disease?

I can assure you that there is no place you could be to better educate yourself and to support your battle.  Be calm and patient.  As soon as we hear back from you, you will get some specific input.

Hawk

[speechless]

Hawk,

Like I said before I do have pain in my penis especially when erect but also when flacid. I also stated that "The Dr told me that I had peyronies but didn't have any ideas of what could be done to help it other than surgery". No treatment options, no medications, nothing. that is why i came here to see what others have done and possibly find a Dr that could help me and knows the disease. The curve in my penis is appoximetly 20 dergrees to the right with the plaque being mid shaft on the right side. It seemed to be getting worse until I just found a small lump just below the tip on the left side that feels like more plaque. Now my penis feels like its being pulled from everyside. It now has a very curvy shape all the way up.  

[Hawk]

Tom F. Lue | UCSF Medical Center is one of the very best there is.

There is also Dr. William O. Brant, Urology
30 N 1900 E
Salt Lake City, UT
801-213-2700

I know less about him but he does specialize in male health issues and ED.  I think he is worth a shot.  since he is in SLC he can't be far fom you.

In the mean time, I would start co-q10, alc.  you will want pentox but you need a good doctor for that.
My guess is you do not smoke, but if you do, stop.
No rough sex.
Read about the VED & Traction under their respective boards.  Highlights are at the top of the boards and will bring you up to speed the fastest

Good luck

Hawk

[LWillisjr]

The Dr told me that I had peyronies but didn't have any ideas of what could be done to help it other than surgery, for me that is the LAST resort.

I know you are trying to cope with this whole issue at the moment. I can't believe your doctor even suggested surgery  at this point. Surgery would only correct the curve and would do nothing for the pain or loss of erection at this stage. So focus on the the primary symptoms. You need to get the pain under control. Pentox has proven favorable, but you could also try Advil or Ibuprofen to see what might work for you. I'm guessing that if you were pain free and erections are firm that you would be feeling differently about all this.

[speechless]

Thank you Hawk for the Dr recomendation!! Salt Lake is 40 minutes from where I live. I am calling his office today. thank you also for the other information on things I can do on my own. Yes lwillisjr I would feel a lot better about things if the pain was gone!

[guyincog]

You may want to go to a pain clinic.  I resisted getting on medication but the pain took a long time to go away and it was pretty debilitating.  

[speechless]

Has Anyone here ever used the DMSO DUSA-SAL gel from Jacob Labs? Also has anyone had the Glutathione IV treatments. I am currently going to an MD Naturalist and he has me starting these. The Glutathione has already made me feel better in genral health ways by detoxing my system, but so far no change with the DMSO gel. If anyone wants a good Vitamin E gelcap, try the Unique E brand.

I have also started on pentox and Acetal-L-Carnitine, After a few weeks on these I can already see a decrease in my pain level. I am just worried though, I have found two new lumps and now I am starting to curve the other way and it's doing it fast. Will the VED help with curving??

[funnyfarm]

Just curious do you notice any soreness or inflammation after you apply the Jacob's DMSO ?  I am also interested in trying it, however I want to see how much progress I can make with the pentox before introducing other options.    

Maybe someone else who has tried it will comment regarding efficacy..  Good Luck !

[Hawk]

Just make sure you closely follow all the precautions for DMSO use.  I have seen few if any even anecdotal reports of benefit from DMSO or DMSO cocktails.

[speechless]

No I have not noticed any inflammation or soreness with the use of the DSMO. My Dr said that it's not something you just rub onto the skin fast. He say's take a little at a time and rub it onto the area Slowly and message as deep as possible.

Hawk, what have you seen as something that has helped the most with the tumors to either reduce them or soften them and helps to straiten the penis?

[Hawk]

First off it is important to understand Peyronies Disease and what is going on.  It has nothing to do with tumors.  

Clearly the first line treatment is the PAV cocktail along with other supplements (co-q 10, L-carnitine)

Next is to add VED and/or traction.  If you want to carefully try hyperthermia, it won't hurt and won't cost much, and may help especially before VED or Traction.

[speechless]

I know exactly what Peyronie's is. But what else do you do you call the big hard fibrous scar tissue like masses growing on my penis. Tumor can be used generically and is not only something that can be malignant or benign. Because what I have is a foreign mass growing in a place where it shouldn't be. I do know also that it is a disease of fibrositis/inflamation.

[Hawk]

Without getting into along hair splitting discussion on tumors, Peyronies Disease is not foreign body growing on your penis (benign or otherwise).

It is a loss of elastin in the collegen fibers and resulting scar tissue.  It is much more akin to adhesions, keloids, and other such hypertropic scaring.  I think looking at keloids which are visible on the skin gives an excellent anology for what is going on with Peyronies plaque on the tunica.