New diagnosis, very confused

Previous topic - Next topic

0 Members and 1 Guest are viewing this topic.

Ralph72

Hello,

I'm sure it's normal to be terrified at this point but I really just want to do everything I can. I read the intro post about the drugs and supplements and VED. My urologist couldn't find anything until I pointed him right to the pain where he said he found a very small "distal" mass that he said is probably Peyronies Disease.

My Internet research has me pretty scared at this point and I'm not sure what to expect. I'll be honest I've not been the most gentle with this organ and neither have my partners, but in recent years I have not noticed any injuries per se. I have a slight curve to the left but I've always had it. This very small mass is near the head, and seems to keep the head soft, erections can happen with stimulation but with a condom forget it, sex isn't possible without constant stimulation. Recently single and it's been 4 years since using them so I didn't really notice the ED. Tried viagra and yes it worked but felt like I had a terrible UTI for 72 hours afterward was very uncomfortable . Still am having urethral pain, this is new and not sure if its related, frequent urination and feeling a need when there is none.

Doctor said wait three months, take vitamin E. He seems very unconcerned and after reading more here my alarm bells are going off. I do not want to take this lightly and even just in the last week it feels worse. I'm in the Detroit area. Thanks for any advice.

Jonbinspain

Your doctor sounds very sanguine about all this! Probably because a) it's not his dick and b) like so many in the medical profession, he knows next to nothing about the disease and therefore doesn't take it seriously.

No! Don't wait. You need to see a Urologist ASAP. Preferably one who is a Peyronies specialist. Vit E won't do you any major harm, but equally it won't do much for Peyronies, if indeed that's what it is. You need a confirmed diagnosis and then start with proper treatment. I don't wish to scare you, but waiting is the worst thing you can do!...

welshwales

I'll second everything john has said. Your uro has only guessed at your diagnosis, which is something no scientific professional should do. You need confirmation, and you need to proceed in treating your condition. Seek a second opinion from a uro who knows more about Peyronies Disease. On the plus side at least you've only been asked to wait 3 months. A lot of us were told to wait 12 months. I waited a year, during which time the disease progressed significantly. Take a good look on the Oral Medications board so you know your options. It's best to see a uro when you are informed.

wurzil

My GP really seems on to it. Sent me to Urologist for conformation of Peyronies Disease (Cost $250NZ) ouch. Uro gave me viagra. Woopdedoo.
Back to GP. He's prescribed Lugols 100% & DSMO. Say he uses it for female breast fibrosis also. l've read fantastic stuff re lugols. good for ED also.
Taken internally good for yeast infection. I think Diatomatious earth for silica would be good, alternatetively homeopathic silica 6x to help drive out sofened scare tissue. Should also help ED
I also think a mastubation holiday good idea.

skunkworks

So currently Wurzil you are taking none of the evidence based treatments for Peyronie's. It does not sound like your GP is 'on to it'.
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

Ralph72

Thanks much! I'm not sure how to find a peyronies specialist here near Detroit, any hints?

Went back and saw the nurse practitioner, told her I am interested in what could be done more aggressively. My uro is supposedly one of the best around and was pretty detailed about Peyronies Disease, but they have not heard about using "pentox" as a treatment so that was puzzling. I currently take a blood thinner for afib, how similar is that to what pentox does? They talked about the injections and gave me low dose Cialis. Got them to schedule a penile Doppler ultrasound. They said not to start any pumps or anything just yet.  

Jonbinspain

Ralph 72;

There is a list of those that are known to members and recommended. Here is the link.


https://www.peyroniesforum.net/index.php/topic,4063.0.html

UrsusMinor

Hey, Wurzil--

If I were in your situation...hey, wait a minute, I sort of AM in your situation. I am pursuing a number of things discussed on this forum that have some evidence of effectiveness...as well as some that don't have much evidence of effectiveness.

I wouldn't be content to have my doctor stick me on DMSO and Iodine--though there are some people (not around this forum) who swear by them.

In any case, if you stick with that doctor and regimen, please let us know how it goes. It's an interesting experiment. Not one I'd sign up for, but interesting nonetheless. And I wish you the best of luck. If Lugol's and DMSO will reverse Peyronie's, I'd love to know about it!

wurzil

Skunkworks. l have a mentally unwell son.
l don't see any evidence of his 'evidence based' medication being in the business of curing him.
l work on the philosophy that no allopathic doctor can cure chronic illness. While my GP is, an allopathic doctor he is widely enough read to know that no  drug will actually cure you. He tells me he's used this treatment sucessfully in the past on womens breasts and mens cocks.
While l hear what you say about this treatment l do believe that in combo with silica to help remove the debris it's worth a try as l've read that while the DMSO softens the plaque it hardens up again once you stop. This indicates to me that the softened plaque has had no vehicle to wash it away.
Anyway, l'll keep you posted.  

Mending the Bend

Ralph72 -

Here is another list of Peyronies Disease doctors in Michigan:

http://www.peyroniesassociation.org/physician-finder-results/#michigan

I also recommend that you go see a good doctor promptly and discuss potential treatment courses ASAP.

Good luck.

Ralph72

Thanks all, I called a couple of the local ones (not the one in Holland which is several hours away) and they didn't seem to indicate they were Peyronies Disease specialists per se.

Been trying to get more answers from current uro and it really seems like a difficult process. Definitely feels like I need to keep looking.

melting

Quote from: wurzil on July 29, 2014, 06:14:39 AM
My GP really seems on to it. Sent me to Urologist for conformation of Peyronies Disease (Cost $250NZ) ouch. Uro gave me viagra. Woopdedoo.
Back to GP. He's prescribed Lugols 100% & DSMO. Say he uses it for female breast fibrosis also. l've read fantastic stuff re lugols. good for ED also.
Taken internally good for yeast infection. I think Diatomatious earth for silica would be good, alternatetively homeopathic silica 6x to help drive out sofened scare tissue. Should also help ED
I also think a mastubation holiday good idea.

Please give more information on "driving out" the softened scar tissue. Maybe start a new thread. Just give ideas and opinions..every idea helps..

I use dmso and various supps that seems to soften it but then it doesnt drive out...
Daily Transdermals and Traction/VED solved my Peyronies Disease https://www.peyroniesforum.net/index.php/topic,12587.0.html (DMSO+X)

Jonbinspain

Ralph 72;

It depends how much your dick is worth to you! My advice would be to find the right Uro - wherever he is.  The guy that you're currently with sounds like he's prevaricating as he either can't, or isn't willing to help you any further. Dump him! and find a one who understands this disease and knows what he's doing.

melting

Read everything you can find. Standard treatments and alternative. Get well informed.

Then its much easier to make the right descicion. Report back what your URO says and check some fo the guys opinions on here. Most know more then most Uro's.  
Daily Transdermals and Traction/VED solved my Peyronies Disease https://www.peyroniesforum.net/index.php/topic,12587.0.html (DMSO+X)

UrsusMinor

Ralph-- Like Melting suggests, I'd take a day or two (or maybe five) and read widely on this forum before proceeding.

But if you read through this forum you will end up better-informed about Peyronie's than 99% of the urologists out there.

On one hand, you shouldn't wait months before doing anything. On the other, it's not like you're bleeding to death and need an ER. So taking a little time to understand all your options and all the uncertainties will be well worth it.

LWillisjr

This board is for 8-10 posts and has now been locked. Please post any further questions/topics in the appropriate board on the forum.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History