Peyronie's diagnosis without bending (yet)

[c90danwaiel]

Hi all,
   During an appointment to my urologist to check out a case of some ongoing urethral irritation, I was diagnosed with Peyronie's disease.

   I've had no curvature or any physical changes yet, and my penis seems the same as it's always been. I did notice what felt like a nodule a few months ago, but that had since disappeared. Upon mentioning that to my urologist, he felt around my penis and mentioned casually, "You have Peyronie's". He didn't much elaborate on it (my whole appointment was frustratingly quite rushed), but he just mentioned that it could take up to three years for the inflammation to progress and prescribed me Pentoxifylline. Don't recall him even mentioning bending at all.

I did some reading when I got back home, really freaked out, but I'm now trying my best to stay calm. I went out the next day and bought some CoQ10, Arginine, and Acetyl-L-Carnitine, and am improving my diet. Any masturbation I have done or plan to do is/will be very gentle.

Had a few questions for people on here:

1) Has anyone here found out they had Peyronie's before they noticing any bending? If so, what were your results? I'm mentally preparing for the worst, but hoping that perhaps I have just a mild case.

2) I honestly can't feel the nodule that I noticed before, nor any scar tissue in my penis. Can it move around or disappear? My doctor really had to palpate to find it, so I'm guessing it migrated deeper perhaps.

3) Is an ultrasound test better than the doctor doing palpation? My urologist was running behind on time and really rushed things, so I didn't get to ask a lot of questions.

The only symptom I do have is my penis has felt somewhat achy lately. I think maybe I attributed that to my month-long urethral irritation (and I'm sure some of it is), but now I realize a lot of it is likely due to Pyronie's inflammation.

Trying my best to stay calm about everything. It was a bit frustrating to have all this worry about my month-long still unresolved urethral issues (combined with a separate scare over herpes, which I have to wait another month to test for), and now I have three years before I'm out of the woods with Peyronie's. Looks like there's some good treatments though, so I'm trying to stay in the best frame of mind I can.

Thanks,
DJ

[NeoV]

The nodule can be vascular or lymphatic vessels which have been damaged, but it's hard to know which is which. You should see a specialist who will give you an ultrasound. Peyronie's diagnosies are often messy and inaccurate but any penile damage can be viewed and treated as Peyronie's for the most part.

It seems to me that there's a large chance you don't have it, but better safe than sorry so do be careful. An achy penis sounds like penile damage to me, and is what most of us have. My penis did ache for years before bending. It can be very hard to get a definitive diagnosis, but the disease is very real, devestating, and more common than most realize.

[c90danwaiel]

Thanks for the reply. I'm currently wondering if it might be a lymphocele. The nodule I found was smaller than a BB and just disappeared on its own. I can't feel anything abnormal in my penis now. The only that that I can detect is a pain in my urethra when I apply pressure in one particular spot from the outside.

I'm not sure what to think of my urologist now. Just looked his credentials up with the state and he's currently on probation.

Some of the statements he made don't make any sense to me. For instance, he stated that the Peyronie's would have nothing to do with my urethral irritation. But then he told me to take herpes meds for a week, to see if that's the cause of my urethral irritation, and only then wait to take Pyrox, insinuating that the Peyronie's could be causing my urethritis too. None of that makes any sense to me.

So confused. And my urethritis symptoms don't match herpes at all, from all the reputable sources I've read. I should be experiencing the worst pain of my life when I'm urinating (since urine is flowing past open herpes lesions), and I'm not having any pain while urinating at all - just afterwards. And herpes lesions resolve in 7-10 days, and it's been 21 days. But he instantly thought it was herpes. Sorry to go off on a tangent there. Just really frustrated.

I'm definitely not discounting Peyronie's. The pain in my penis is worrying and that matches Peyrone's, although I'm wondering if the pain is related to the urethral irritation I've had for over three weeks now. The achiness has gotten worse in the past 36 hrs., although I'm guessing that has to be psychosomatic, since it started as soon as I started researching Peyrone's online.

I've made an appointment with a second urologist for another opinion, and will be continuing my supplements just in case. Hopefully the new urologist can do an ultrasound and give me a fresh opinion.

[NeoV]

Urethral irritation can be herpes, even if you don't have a true outbreak. This is particularly true if it's HSV-1, which it usually is due to receiving oral sex. I'm surprised he didn't get you on an antibiotic in case it was bacterial, but taking HSV meds is not a terrible idea, since it will help your body fight it in the future if you take the medication now. A week on them will make you tired, but isn't the end of the world.

Personally, I have a theory that urethral issues can be related to Peyronie's, but that's a different topic, and for now I would treat both separately.

[nemo]

It sounds to me like you're very well advised to get a second opinion. This urologist (or at least his treatment of you) sounds questionable. Telling a guy offhandedly that he has Peyronies Disease without a good talk about it is pretty reckless, leading to exactly the kind of panic you're experiencing. That poor bedside manner at the least.

I seriously question whether you have Peyronies Disease and highly suggest you get a second opinion. My suspicion is that your putting yourself through hell for nothing. And I hope that's the case when all is said and done.

If you do have Peyronies Disease, it sounds like a very mild case that I would not expect to lead to a significant problem. I think the truth is that many more men than we realize have some degree of Peyronies Disease and don't even know it. Not every case is sudden and acute.

Best,
Nemo

[c90danwaiel]

Thanks, that's a big relief to hear. I feel a little less crazy, and a bit calmer waiting for my second opinion. That appointment is a little over a month away, but I'm going to try the best I can to expedite that and get in sooner.

I've felt around my penis both flaccid and erect and don't notice any unusual bumps at all. The bump I did have a few months ago was only around for maybe a week or so, maybe even less. It felt like it was right under the surface of the skin (it was definitely subcutaneous) was round, and not at all painful. It was only noticeable while erect, but I didn't really look for it while I was flaccid.

Has anyone here had a nodule just disappear altogether like that?

And for folks with nodules, has anyone noticed any right under the surface of the skin while you were erect?

Thanks,
DJ

[nemo]

Typically, you're going to feel a Peyronies Disease plaque/nodule when you're flaccid, not when erect. When erect you're generally not able to feel it, but will notice a dent or curve/bend where the nodule is. This, again, makes me think you're not dealing with Peyronies Disease but some thrombosed vein or something transient.  

Best,
Nemo

[c90danwaiel]

Thanks so much for the response. I was lucky and got my appointment moved up to this coming Monday. Still dealing with urinary tract irritation (the herpes meds didn't help and the acute pain remains), and will be getting a second opinion on the Peyronie's diagnosis at the appointment.

I've quit being so anxious and my recent aching has pretty much disappeared, so I'm thinking that might have been psychosomatic. I gave it some thought and realized that when my penis had been achy in the past, it was only after I'd done extensive masturbation (which I've since stopped).

Hoping for the best, but still taking Pentox and supplements and am not counting myself out of the woods yet. Whether I do have Peyronie's or not, just wanted to say thanks to everyone on here and for the info on this forum. It's the best resource out there and helped calm myself down after my initial diagnosis and ensuing panic.