Early signs of peyronie's disease? recent kidney transplant recipient.

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txharry

Hi. I decided to register for this forum after spending several hours reading through it last night.  I have NOT been diagnosed with Peyronies disease (I have an appointment scheduled with a urologist), but I am having symptoms for which I can't seem to find a more likely explanation.  They basically boil down to difficulty maintaining an erection, and a "dent" at the base of the penis on the left side (only noticeable when erect).  Above this dent is the normal spongy tissue, but if i feel the dent itself there is what feels like a hard ligament, or cord. A pinched look at the base (which was previously the widest part of my erection) visible not from my point of view above, but in the mirror. Besides this one area my erections are completely normal looking (they just don't last).  Assuming this could be the beginnings of Peyronies i would like to do everything possible to start treating it right away. I'm hoping this urologist I'm going to see can at least DIAGNOSE it in a satisfactory way. But I'm wondering if there is any point to going to him? Should I just bite the bullet and travel 350 miles to see a Doctor on the list, that has a positive recommendation and is known to prescribe the preferred treatments or who could conclusively diagnose me as NOT having the disease if that's the case? Because my symptoms are subtle at this point (but very noticeable to me) I don't think I would feel totally at ease having this non specialized urologist tell me I'm OK, and would probably end up seeking out someone on the doctor list anyway.

There is a lot more to my story that is probably of interest IF I have peyronies (30 year old, recent kidney transplant and all the drugs and potential surgical trauma that includes, unexplained -by doctors at least- loss of right cremasteric reflex and pain in my right testicle - same side as kidney - immediately following surgery). I don't want to overstep anything by posting something too long and rambling before a proper diagnosis... i would just like to have every early advantage.  Can the disease be stalled the early stages?  Has anyone experienced similar onset symptoms?

Thanks for reading.

nemo

Harry, it certainly sounds like Peyronie's, but whether or not you take a chance on a random urologist really amounts to a coin toss.  Some are "with it" on Peyronie's and others are practically clueless.  However, you'll find that most of the early treatments described on here don't require a doctor's prescription (except for Cialis and Pentox), so there's no reason to completely wait for a doctor's permission to begin treating. Ideally, you want to get on it as early as possible. But it is always good to have a knowledgeable doc on your side - so I'd plan on seeing someone.  

Best,
Nemo
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

txharry

Thanks Nemo.  Having read a a decent amount my impression is that the popular oral treatments are (other than pentox) Ubiquinol, L-arginine, seems like vitamin E can't hurt.  I already take vitamin D, ginger root tea.  I think i can get a prescription for Cialis easily.  Also I suppose I could start with a VED.  Even if the diagnosis turns out to be something else I would imagine little to no harm done.

I did a little research and all of this stuff seems O.K. for transplant patients.  However i don't know if I would get an O.K. from my team just cause they are going to err on the side of caution.  I will stick to reasonable doses.   If I can prevent any farther deformity and regain my ability to maintain an erection I will consider myself very lucky.  My pain is minimal and not increased by erection, and no bending so far.  Keeping my fingers crossed.

 I really think this could be related to the surgery (decreased blood flow, antibiotic drugs, catheter, stent removal, cutting and re-attaching arteries) all I know I was fine before and after not having any erections for nearly 10 days following surgery, i have had 2 or 3 weeks of the the ones with the dent.

Still want to make an appt. with a doctor across the state, I'm hoping I can do it ASAP, not sure if I will need a referral.  I got an appointment with a local urologist without one.  

O.K. I'm really going to try to hold off posting any more until I see a doctor about this, but if there is anything else I can be doing now let me know.


nemo

Harry, I don't think I'd waste my time with Vitamin E. It's never been shown to have any effect on Peyronies Disease. And many here have stopped taking L-Arginine in favor of Citrulline, which is supposed to be more effective than Arginine.

But yes, getting a diagnosis would be the thing to do.  And I did not consider your transplant and potential contraindications of supplements, but you might well want to check before you start taking anything that might interfere with your transplant. Wouldn't want you self-medicating in a way that does you harm.  

Best,
Nemo
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.