40 yo, diagnosed recently, want to treat aggressively

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monekymindcontrol

Hi,

I'm new here, and although this forum is an invaluable resource, and I very much appreciate the time that has gone into creating/maintaining it, I am not finding the organizational structure very perspicuous, and I would like some help finding information on the following topics in particular:

- (monogamous) sex with early-stage Peyronie's (how to avoid making it worse with additional trauma), and general information on how to minimize risk during sex (especially of "buckling")

- dating/casual sex with Peyronie's (unfortunately my current monogamous partner and I may not be together much longer – for unrelated reasons)

Some background information:

I am 40 yo, no other health issues, no consistent ED problem though I have used Viagra "recreationally" for several years. I was diagnosed with Peyronie's a couple months ago (based just on a brief manual examination of my flaccid penis) after mild erectile discomfort starting early this year and detecting a palpable plaque after a "buckling" incident during sex in July. I went to a urologist who I now believe was totally unqualified for this: he just told me to wait and see and tried to get me to mail-order coq10 from some company (which he presumably gets a kickback from...). Took some generic coq10 and continued to have sex, trying to be careful, but had another buckling incident in early October and now notice a bigger plaque and a pronounced curvature I had not noticed before; have not had sex since. Found this forum and a urologist in my area recommended on it for Peyronie's; have an appointment Monday and hope to pursue aggressive treatment.

I'd appreciate any tips on finding more information in this forum (or other sources) on the best strategy to slow/halt the progression of the condition and to manage my sex life during this process, especially if there are other distillations of "best practice" checklists like the survival guide.

Thanks in advance,
Monkeymind

Jonbinspain

Somebody should find all these 'wait and see' urologists and give them a whack around the head! Wait and see what? Wait and see it get worse? Because that's what almost always happens.

If your new urologist knows about and recommends this forum, hopefully he will be happy to prescribe Pentox for you. I'm assuming you're still in the active phase?

Blood flow to the penis is essential and low dose 5mg Cialis will also help. Look also at ALC, Citrulline Malate. CoQ10 is also helpful, but switch to Ubiquinol if money isn't a problem. It's far more bio available.

For the curvature, get started with traction or VED, or both.

Just a warning on your desire to treat this aggressively. Yes, you have to start fighting this now, but be careful that you don't get too aggressive in your use of supplements, and particularly be cautious in the use of VED or traction.

Read all you can here and feel free to ask questions if you have any doubts. You will hopefully know more about what stage you're at after your appointment.  

kuaka

I will add to that a recent discovery of mine that Magnesium deficiency may have a role in scarring, fibrosis conditions in general.  Consider a good supplement or seek Magnesium rich foods (preferred).

And find a uro who doesn't say "wait and see".

LWillisjr

We don't have a specific topic of how to avoid trauma during sex. The best advice I can give is to stick to positions where "you are in control". For example.... for sure we know that one of the worse positions is Cowgirl (woman on top). Basically because if you slip out and she doesn't know it soon enough and can come down on you to cause the trauma/buckling. So this position we suggest avoiding. Aside from that.... be careful.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Lostinspace

I hate to sound like a broken record...focus on controlling inflammation. Through diet, exercise, stress management, lifestyle changes, etc. This forum has some of the best ideas and advice. Be aggressive and persistent!  Don't listen to wait and see!!!!!  

QuackAttack

New to the forum as well. I got a wait and see from the PA in urology at Walter Reed in Bethesda, MD. I didn't even get to see the Peyronies specialist. Anyway, I was given Colchicine and Vitamin "V" (Viagra) and told to come back in about 3 months. I stopped the Colchicine due to terrible stomach cramping and major intestinal discomfort (common with this drug). I asked if there was anything else that they could prescribe and they offered a medication to help control diarhea. Great, so take a med that is causing problems and solve the problem by stopping up my intestinal system with another med. All the while the first med might be causing damage to my intestinal system.  Since I have non-Celiac gluten tolerance, I have enough issues with my intestines that I know better. They said to take the Viagra to ensure firm erections. However, since using a traction device, and 50% DMSO w/aloe and Vitamin E and potassium iodate, I have been waking up with very firm erections, teenager type. Can't say it will benefit you, but I am taking the approach that anything is worth a try, short of surgery (absolute last resort).

As with others, if your Doc says take a wait and see approach, fire him and move on.  If your Doc had this issue, would he have a wait and see approach? I'll bet not. However, considering many doctors, surgeons especially, have a God complex, they may just be arrogant enough to take that approach. I suggest you read everything you can on this forum and elsewhere on the Internet so that you become the expert and when you go in to the the Doc, you will have plenty of ammo and you will know as much or more than the Doc about the latest advances and alternative therapies.

When my wife and I had our first child, the doctor came in the next morning, pulled me aside and scolded me for not vaccinating her with the Hep B vaccine.  I asked him why would I do that and his response was because it protects against sexually transmitted diseases.  My response was: "She is 9 hours old, as far as I can tell, she isn't sexually active and she will never be." The Doc dropped his jaw in shock and though I was a nut. This was at the hospital at Nellis AFB in Las Vegas and I said to him are you aware that that vaccine has Thimerosal, which is 49.5% ethyl mercury! His response was no it doesn't all of our vaccines have had it removed.  I said maybe you should go read the vaccine insert for every vaccine given at Nellis like I did and you might be surprised by what you find.  An hour later he came back to me and apologized and said that he was going to have to think twice about the vaccine when his wife gave birth to their first child about a month later.  My point here is you need to become the expert, because it is your body and you are the manager of your body not the doctor.  Because, when it comes right down to it, you care more about your body than the doctor and that doctor may very well be a fine, decent and caring person, but nobody is going to care more for you than yourself, except maybe your mother.

Good Luck
John

kuaka

Yes, we have to become our own experts.  One of my biggest gripes with the "profession" is the tendency to treat symptoms, then treat side effects.  I almost lost my wife of 26 years a few years ago due to that stupidity.  I had trouble with pneumonia for years after my severe accident, which left me with scarring in my right lung and ribs that did not expand right, and no spleen.  One time, I went to a dr in a new town and he prescribed oral amoxycillin.  I told him it was a waste of time.  He had the gall to ask me how long I'd been practicing medicine.  I asked him how long he'd been living in my body.  I had been that route before and had pneumonia for eight years as a result.  Why is it we pay the two most highly paid professionals to practice? (lawyers and doctors)  I want performance, not practice.  

Yes, find a URO who knows Peyronie's.  Here are some links to help.

Dr's members here have experience with.

https://www.peyroniesforum.net/index.php/board,37.0.html
https://www.peyroniesforum.net/index.php/topic,4063.0.html

Dr's who have published papers in this area of expertise.

http://expertscape.com/ex/penile+induration

A humorous and informative talk on penis anatomy.

http://www.ted.com/talks/diane_kelly_what_we_didn_t_know_about_penis_anatomy