I finally went to a specialist today, and I feel awful!

[Rags]

So almost a decade ago while in college, I got a little too drunk, and had a one night stand. The combination of alcohol and nerves (it was in fact one of my first times having sex) gave me what they refer to as "whiskey dick," for lack of a better term. It was the first time I had ever experienced the situation, and didn't know what was happening; I got frustrated and kept trying to make it happen, and as a result, I kept unintentionally slamming my penis against my partner's pelvic bone while about 90% erect. She then tried to get on top and I remember my penis bending repeatedly as she tried to insert it, with the weight of her body hurting it. Typing that out sounds ridiculous and it's embarrassing and humiliating to even talk about this, but it is what it is. I guess I could shorten this story to say "tried to have sex while not fully erect," but I think it's important to mention the alcohol, because if there was any pain, I could have been somewhat numbed to it.

I didn't notice any significant trauma, I didn't go into physical agony or anything, I just couldn't keep my erection up and we finally stopped. But a day or two later, I began to notice a pinch in the skin in the middle of my shaft while flaccid. It continued to get worse, and my penis took on an hourglass shape, and looked droopy. While erect I didn't seem to have any physical signs, but while flaccid it was always pinched in an hourglass shape and I no longer had the girth and firmness I used to have while flaccid. Over time I self-diagnosed it as Peyronie's, and it stabilized to a certain extent within the last few years -- the droopiness is nowhere near as bad, the occasional pain I used to get is all gone, and for the most part I don't experience issues with erections and don't have a significant bend. What I do have, however, is less girth, particularly while flaccid; I often take on an hourglass shape with the middle of the shaft dented in, and while my penis does start to expand in the semi-erect state, the bottom and top always fill out first, while the middle looks constricted. When fully erect, it's thankfully not visually noticeable and no partner has ever commented on it, but I always feel a bit of constriction in the middle of my penis and it does cause a very, very slight dent to the left in the middle of my shaft. I also feel as though it's harder for me to maintain erections compared to before the injury occurred, so especially if my partner is on top and if I'm in a position where increased blood flow is important, I'll find myself losing a full erection much faster because the blood flow in the middle seems to be constricted. If you think about it, if you're lying on your back, your penis has to do a bit more work to retain blood flow, so it makes sense. It's not a major issue, but it happens sometimes, and then when it happens, it can create anxiety which in turn makes it even worse -- a horrible kind of chain reaction. It just happened last weekend with a new sexual partner, in fact, who enjoys being on top; she was cool about it, but I didn't know how to explain to her that it was because of all this crap. I just chalked it up to nerves, which is almost less embarrassing to have to explain.

After that happened last weekend, I finally gathered up the nerve to see a specialist this morning, who is apparently an expert in the field of Peyronie's. I showed him some photos of the hour-glassing (which is admittedly not nearly as bad as it was a few years ago, as it seems to have stabilized more, but it's visually noticeable), I told him my story, and I mentioned that although I'm 90% fine during sexual intercourse, on occasions such as my partner wanting to be on top I notice more issues maintaining my erection and my penis is more apt to "break"/bend in the middle where the injury occurred. It isn't really painful when it happens, but it always scares me that it could worsen the scarring.

He seemed to disagree with my self-diagnosis, and I could tell he thought it was mostly just in my head. I know I was a ball of anxiety in his office, and I think he was picking up on that vibe and so he tried to reassure me that my condition wasn't that bad -- but I really had just hoped for more answers on what happened to me! Instead, I felt pretty dismissed. He told me that he didn't feel any plaque, and that without plaque he wasn't convinced it was Peyronie's, and he also didn't think my drunken incident in college had anything to do with it. (That's the part that bugged me the most, because my penis shape literally became deformed a day or two afterward, and when I asked him what that was, he seemed to shrug it off.) I think he thought I was just being a hypochondriac and that my anxiety was causing psychological issues, and I get that -- and I'm sure some of that is involved during sex when I start to worry that the scar tissue is causing blood flow issues, like last weekend -- but I know what my penis used to look like, and what it used to feel like, and I know that it changed after that evening and that the "skin pinching" hour glass effect began literally a day or two afterward. I know that I used to experience occasional sharp pain (which has also stabilized), and that I have lost girth. I felt a little bit patronized when he told me that I had nothing to worry about, because at the end of the day I'd still like to know what exactly caused this to happen to me. I agree that I'm fortunate it's not way worse or causing significant deformity, but I could tell that he was dismissing me altogether as being anxious about it, and so he wrote me a prescription for generic Cialis and said he "didn't expect me to be dealing with this a year down the road."

I'm not mad per se, because I think he was trying to be nice and make me feel better -- and I appreciate that. He probably sees patients with significant Peyronie's on a daily basis, so mine probably looks like nothing by comparison. But I feel incredibly frustrated because I was expecting some answers or understanding, but when I asked him what could have caused the hourglass shape, he didn't really have an answer and I almost inferred that he thought I was imagining things. He said it was hard to say without photos before the injury, but that based on his diagnosis he felt no plaque and didn't see any reason for me to consider surgical treatment. I showed him the photo of my penis flaccid once more and asked "so what could cause that sort of hour glass shape in the middle to just appear out of nowhere?" and he said that if I were a 50-year-old man, he might look at that photo and think it was an early sign of Peyronie's, but that I was too young and healthy for it to be; and that if I'd actually damaged my penis that night during sex, I would have gone right to the emergency room with black and blue bruising on my shaft.

So. Here I am. Just wondering if anyone out there has any advice or opinions on this. I know i'm lucky it's not worse, that when I'm erect it's not visually noticeable to my partners, and I'm lucky it doesn't significantly impact my sexual performance. But I was just hoping for more clarity on my situation. Is this worth pursuing with another urologist, maybe one who DOESN'T specialize in Peyronie's? Is this perhaps a different kind of penile scarring that caused some non-palpable plaque that another urologist would be more inclined to order imaging of? I really just want to have some peace and mind once and for all, and to be able to evaluate what treatments may be out there.

(EDIT: Just read the rules about how these threads are locked after 10 posts. Is there another subforum on here that I should post this in, too? I wasn't sure which one it pertained to the most.)

[blackdiamond]

Rags
I would def see another Peyronies specialist if nothing else just for piece of mind.........
Sounds like u should have some imaging done.

[Rags]

I live in PA and unfortunately the guy I went to seems to be the only person in the area I can find who's got a background dealing with Peyronie's.
If anyone knows of any doctors in the region of Philly (I'm 90mins from there and willing to make the drive) I'm open to suggestions!
Thank you.

[TDix]

I would find a urologist willing to at least do a Doppler ultrasound for your own piece of mind.  I too went to a few urologists.  First one was like yours, second one was more aggressive in treatment and more personable, but not a specialist.  My current dr is an Andrologist and Peyronies specialist who ended up doing surgery on me.  Don't give up until you find a dr you like that cares.  They are out there

[TDix]

What type of insurance do you have if you don't mind me asking

[TonySa]

Sounds like the doc is off base, especially with your history and symptoms (hourglassing) that he didn't do a flaccid ultrasound to identify plaque.  That said, it sounds like you're stabilized and with proper care (be erect when using penis for sex) should be in good shape.  You could try VED or traction to address the hourglassing.  Maybe add pentox and/or low dose nightly PDE5i to reduce the plaque.  Good luck, you're in the right place.  Also, check out the survival guide here: Peyronies Survival Guide - Information for New Members - Peyronies Society Forums

[blackdiamond]

Rags check the Doc list on this board.......I saw one in Philly that someone made good comments about.
Also in the past I recall others mentioning a good doc in Norristown but not sure how far u are from there...Good Luck.......

[Stepone]

I lived in PA, went to MD to find a good urologist that specializes in Peyronies Disease. They are located in Towson, MD. Chesapeake Urologists. You just need to find the right urologist that treats Peyronies Disease. I ended up going to 5 urologists, the first 2 were incompetent, one was in VA, one was in Baltimore at JHH and finally I found the best one at Chesapeake Urology.

[Rags]

What type of insurance do you have if you don't mind me asking

I believe it's Highmark Blue Cross but I know there are different divisions of Highmark and I forget exactly which one it is. Usually my specialist co-pay is thirty bucks.

[Rags]

Sounds like the doc is off base, especially with your history and symptoms (hourglassing) that he didn't do a flaccid ultrasound to identify plaque.  That said, it sounds like you're stabilized and with proper care (be erect when using penis for sex) should be in good shape.  You could try VED or traction to address the hourglassing.  Maybe add pentox and/or low dose nightly PDE5i to reduce the plaque.  Good luck, you're in the right place.  Also, check out the survival guide here: Peyronies Survival Guide - Information for New Members - Peyronies Society Forums

Thank you. Yes, I felt like the doc totally shrugged off my hourglassing. I told him it was more noticeable while flaccid and he said "I'm more interested in seeing it when erect." It just seemed a bit odd to me that I was telling him the literal shape of my penis had changed after that night in college, and he said he thought it had no correlation with the hourglass -- it was like he really thought I was imagining it all. At the same time, as I mentioned before, I think he was just trying to make me feel better and realize that in the grand scheme of things my situation isn't going to prevent me from engaging in sex as it probably does for many men, so I somewhat understand where he was coming from. I just wasn't looking to get told that I was mostly OK--I wanted better answers on what exactly I am dealing with!

He told me any procedures out there would completely not be worth the possible downsides given my situation. He said it would actually be medical malpractice to allow me to consider them, and I am fine with that. However, if I meet with him again (I have another check-in scheduled for a year from now), do you have advice on how I can better present some of this info to him regarding the hourglassing and also what should I specifically ask for in regards to pentox and the other drug you recommended? I Googled them and they're apparently prescription-based, so I'd have to get him to write a note for me. Thanks so much!

[TonySa]

You could just get started on low dose nightly cialis or viagra and VED or traction.  You could ask your primary doc for pentox, or find a different urologist.

[Rags]

You could just get started on low dose nightly cialis or viagra and VED or traction.  You could ask your primary doc for pentox, or find a different urologist.

Thanks. Question though - I got generic Cialis from this last doctor's visit, but my insurance doesn't cover it (or any ED drugs apparently). It's really expensive even in generic form. 10 pills is going to cost me $120 I believe. (I can split them in half because they're the 10mg's and my doc said 5mg should be fine, so it's really like getting 20 pills. But that's still less than a month's supply if I'm taking them daily.) Is Pentox generally cheaper/covered by insurance or do you have any other insight in terms of ways I could get my insurance to cover these/get them cheaper?

[TonySa]

Ask fir generic viagra/revatio 100mg.  Cut in halves and you have 180 doses for $77.  That's 44 cents each.