On Getting Bent Out of Shape – Yet Again
David R. Weiss
If you follow my posts, whether on Facebook or my blog, you know this is nothing new. Over theology, church, politics, and an array of social issues I’m positively prone to getting bent out of shape. But this is different.
This is about me. Literally. Getting bent out of shape. I have Peyronie’s Disease (PD). Which means my penis gets bent out of shape. But, get this, only during erections. So that’s fun. NOT.
Anyway, I’ve decided to write about it for several reasons. First, it’s a condition that is shrouded in embarrassment and shame—so much so that the best guesses at its incidence range from 1% to 23%. Often the best “cure” for shame is honest vulnerability, so I’m going to go there. (Inspired by the courage I’ve seen several friends display in going public about their own health challenges.) Second, progress in understanding and treatment of PD will no doubt go faster the more of us who are willing to acknowledge our condition to our doctors . . . and to each other. Third, as someone who’s made it my business to think and write about sexuality on behalf of others, maybe it’s my turn to write on behalf of myself. And, fourth, because, after several years of being “stable,” my Peyronie’s has decided to flare up again, a phrase that is, sadly, both metaphorically and anatomically accurate.
It’s a lot to cover in a single post. So I’ll make a start here, but I’ll likely revisit a few of these ideas again in the future.
Peyronie’s Disease: a brief description. First off, it’s not really a disease at all. You can’t “catch it,” and it isn’t caused by any bacteria, virus, or other outside agent. In fact, no one knows exactly what causes it. Some suggest it would be more appropriately named Peyronie’s Syndrome since it really names a collection of related symptoms not yet fully understood. Current thinking holds that PD is the result of injury/trauma to the penis, which the body responds to in a dysfunctional way: by producing fibrous plaque (think: stiff scar tissue) inside the penis. This injury/trauma might happen during athletic activity or an accident, or it could happen during “vigorous” sex or even just during a passing moment of human clumsiness during intercourse.
It seems likely that every penis undergoes minor injury/trauma at multiple points during a lifetime, but only some of us* develop fibrous plaque as a result. In most cases, the penis heals itself just fine.
* I initially wrote “some men”—but the truth is, there are also transgender and intersex persons with penises. And PD is specific to the penis not to persons called “male” or “men.” So rather than cringe every time I write “men,” or be oddly disembodied about it and only refer to penises, I’m simply using the first person plural “us” to refer to the community of penis-bearers, whatever sex or gender we are.
Moreover, the severity of the trauma is not what’s significant; most of us with PD cannot remember a specific moment when we hurt our penis. And plenty who can recall—often with a visible wince—a time when they smacked, bent, dinged, pinched, or otherwise traumatized their member, never develop Peyronie’s. So it’s a bit of a crapshoot.
For those of us who do, it’s like winning the un-lottery. There’s some evidence that genes play a role because PD shows up with a higher incidence within families than in the general population. (My dad had it, though only briefly. His case resolved after a single visit, some thirty years ago, to a doctor who prescribed what my dad remembers only as an especially nasty tasting medicine. And, Ben, as often as it please me when people say of us, apple:tree, I hope on this count that your apple did not fall from a bent branch.) And it shows up more often in persons with another connective tissue disorder, Dupuytren’s contracture, which afflicts the palms of the hand, bending the fingers inward. So some of us are likely just genetically predisposed to have our bodies—in this case, our penises—overreact to the slightest injury. Lucky us.
What happens. Regardless of how the injury occurs, the tiny tears in the connective tissue, rather than healing back to normal, create thick stiff scar tissue (aka fibrous plaque). Inside your penis. Anywhere they want. Just beneath the skin. I think it’s most commonly found (as in my case) along the top of the shaft, but sometimes the plaque forms on one side or the other; sometimes on the bottom of the shaft; sometimes like pea-sized marbles here and there; and sometimes even rather like a tourniquet around the circumference of the shaft.
This plaque—how to describe it? Think of a small plastic comb, like you might keep in your back pocket. The spine of that comb is stiff; it bends ever so slightly in your pocket, but not easily. Now imagine inserting that type of stiff-but-barely-flexible material into a penis. Imagine it, roughly three-eighths of an inch wide and about an inch-and-a-half long, just beneath the skin on the top of the shaft, right behind the head of the penis. That’s me. Well, that’s my penis. If that’s not a sufficiently disconcerting image, consider that one “nick-name” for PD is “bent nail syndrome.” OUCH!!!
How it plays out. Most of the time this plaque, wherever it’s decided to make its little penile home, just sits there. In a flaccid penis you can feel it with your fingers, but it’s not uncomfortable. It’s barely noticeable unless you go looking for it, because everything is relaxed. It’s when things get exciting that they can also get very awkward. During arousal—and, let’s be honest, who doesn’t enjoy a little arousal now and then?—blood rushes to the flaccid penis and engorges the tissue there. As the tissue fills with blood it expands, thickens, stiffens, and—viola!—you get an erection. Unfortunately, when you have PD, the plaque refuses to play along, so the erection has to bend around it. It’s a real killjoy.
Meaning, if the plaque is on right or left side of the shaft, the erection bends to the right or left; the severity of the bend varies, but it can be almost at a right angle. If the plaque is on the bottom, it pulls the erection downward, often painfully so. If it’s formed a sort of tourniquet around the shaft, the erection takes on an hourglass shape creating a weakness mid-shaft because the tissue there can’t fill with blood.
I have perhaps the least painful variation because in my case, quite like the “bent nail” image (which still screams OUCH! In my mind), my penis simply has an overenthusiastic upward arch. But “overenthusiastic” can understate things. That arch can also approach (or exceed) a right angle. And if you’re familiar with vaginal architecture and the dynamics of intercourse, you know that a right angle instrument was not an original design feature. And if the arch is sufficiently “enthusiastic” it can stretch the urethra so taut on the underside of the erect penis that ejaculation becomes uncomfortable, painful, or even impossible. I’m not quite there. Yet.
My personal saga. As I look back, I’m guessing my first PD symptoms showed up in spring 2010, but I never noticed because I have no recollection of specific injury or trauma, so I wasn’t watching for them. As the plaque accumulated bit by bit (over weeks or months?), I gradually took notice. And so did Margaret. But nobody likes to say, “Hey, something’s out of whack down there.” I’m sure had the bend gone left or right or downward or hourglass, it would’ve caught our notice sooner. So it was late spring or early summer before we actually addressed the situation, first between ourselves, then with my doctor who referred me to a specialist in ED (Peyronie’s is one type of erectile dysfunction).
This specialist wasn’t actually a doctor; he was a physician’s assistant whose focus was on “male sexual dysfunction”—not exactly the demographic I aspired to. But Ken was a godsend. He was also black. Given the racialized cultural weight of masculinity and myth, Ken’s blackness is no incidental detail. I was a white man showing my “broken” penis to a black man, and asking him if he could fix it. That’s a chapter in U.S. race relations that hasn’t been written yet.
And yet this is what happened. Ken (who is nationally regarded for his work on men’s sexual health) was committed professionally to as noninvasive approach as possible. That meant—thankfully, for me!—that he had no desire to slice open my penis and attempt to remove the plaque (which is one treatment option) and no interest in giving me regular (and I’ve heard painful) injections of (potentially) plaque-fighting substances directly into my penis. Instead he put me on oral Pentoxifylline, a medication with anti-inflammatory and anti-fibrous effects, and which improves blood circulation. He also put me on oral L-Arginine, an amino acid that seems helpful in preventing scar tissue from forming. And he used ultrasound directly on the plaque to work toward softening it up and (to some extent) to break it apart.
Now let’s unpack that last sentence. Twelve times, from November 2010 to early March 2011, I went to Ken’s office where I laid on a table with my penis popped through the little hole in a blue clinic paper towel while Ken put gel on an ultrasound wand and then proceeded to hold my penis flat with one hand while holding the wand directly on the topside of my penis where the plaque resided. And then, for the next fifteen minutes, we filled the time by talking about our respective families and our respective work. Because he dealt with men experiencing physical sexual dysfunction and shame and because I’ve dealt with persons in the church experiencing spiritual shame on account of sexuality, we actually had some pretty substantive conversations under those rather peculiar circumstances. But we never talked about the exquisite irony of a white man being so emotionally and physically vulnerable at the hands(!) of a black man who—against virtually everything taught in our culture—was a sexual healer to me.
The aim of these treatments was to make the plaque (which has never disappeared) at least malleable. Malleable enough to be stretched. So, finally, for roughly the last six months of 2011, I wore a traction device. That’s right. All those ads promising you “inches” of added glory? That was me, just trying to get back the inch or two I’d lost to “the bend,” and to straighten the damn thing out again. It was easily my least favorite chapter of the experience. I was decidedly self-conscious about wearing the contraption, despite its FDA-approved status. It operated on the basic principle that if you persistently stretch your penis, new cells would form and, as the plaque itself was straightened, the lost length would return. I hated every minute of it. As a result I carried as much tension in my head as I did in my pants for several hours each day. By Christmas 2011 Margaret and I both agreed I was near enough “normal” to give things a rest.
And that’s the way it’s been for the past six years. Until a few months ago when things started looking up again—which, in my case, is exactly NOT how you want things to look. It feels like the plaque is hardening and/or increasing, meaning that the upward arch is once again “overenthusiastic.” I’m all for enthusiastic sex. But an overenthusiastic arch means that sex becomes a sort of dance, not out of joy, but out of necessity. Margaret and I . . . adapt. And lovingly so.
But I face some decisions about resuming treatment. Ken has left the Twin Cities, having recently founded a program for training Physician’s Assistants at Meharry Medical College, an historically black medical school founded in 1876. I’m happy for him. But I wish he were still here for consultation and treatment. It’s no small thing to take your own small thing to a new person when so much is at stake. And if you spend any time at all on Peyronie’s-related internet forums you learn that it’s a rare gift to find a doctor who is at once so clinically astute and so palpably compassionate.
Then just last month Reuters Health News reported on a study showing that persons with Peyronie’s have an elevated risk for cancer in general, and most notably for skin, stomach, and testicular cancer. That’s right, my bent penis is putting a target on my testicles, too.** When it rains, it pours.
** Not to be overly dramatic; the risk for testicular cancer is very small to begin with (1 in 263). But my odds just went up by 40% to about 1 in 210. For stomach cancer my odds rose from 1 in 111 to about 1 in 88. Of course, other risks factors come into play as well, and hopefully some of them are in my favor.
A concluding observation. Peyronie’s is the “perfect storm” of a malady. No known cause. No known cure. Culturally our penises are nicknamed our “manhood”; if my penis is bent, how can my manhood not also be seriously compromised? Even if we know that our identity is not defined by our capacity to perform sexually, for those of us with sexual desire Peyronie’s can still puts a decided crimp in it—our identity, that is. Add in the general embarrassment we’ve been taught to feel over sexuality—and then the shame of a condition that only arises during arousal—and you have a recipe for an affliction that isolates, humiliates, and drives people to both despair and desperation. As evidenced both by the risks endured in treatments that rarely offer unmitigated success (and occasionally produce tragic outcomes) and also by the wide array of “alternative” remedies recommended and marketed on the internet.
It’s not unusual to see a young parent post on Facebook, “My kid is waking up every night with bad dreams! Anyone else deal with this? How?! Please help!” But when was the last time you saw someone post, “My penis is bent! Sex is awkward. I feel embarrassed around my wife. And ashamed. Anyone else deal with this? How?! Please help!” I’m betting tonight is your first time.
I’m no expert. But I’m not going to be isolated any longer. Pooled knowledge is always better than hidden knowledge. And solidarity is welcome. All. Day. Long. It may well be the most healing salve of all.
There is, I believe, if not a cure, at least a major breakthrough still out there waiting to be discovered. And talking more openly may get us there a little bit sooner. It lies, no doubt, just around the next bend.
* * *
David R. Weiss is the author of When God Was a Little Girl, a playfully profound and slyly subversive children’s picture book (Beaver’s Pond Press, 2013; www.WhenGodWasaLittleGirl.com) as well as To the Tune of a Welcoming God: Lyrical reflections on sexuality, spirituality and the wideness of God’s welcome (2008, Langdon Street Press). A theologian, writer, poet and hymnist, David is committed to doing “public theology” around issues of sexuality, justice, diversity, and peace. He lives in St. Paul and speaks on college campuses and at church and community events. You can reach him at email@example.com and read more at www.ToTheTune.com where he blogs under the theme, “Full Frontal Faith: Erring on the Edge of Honest.”
I thought I’d add my experience of PD as a Christian. It is a terrible condition that will drain your confidence and leave you isolated and desperate. If you are married, you at least have a wife who may understand and support you. If you don’t, you live in a twilight zone where you have to find out things like whether your PD is still bad enough to prevent you asking girls on dates. It is a relentless psychological and emotional pressure applied to a man. It is hard for anyone to imagine who does not have it. What do you do, as a single Christian man? Who do you tell? Do you tell your pastor? Your best friend? The reality is there is no-one you can tell. Best friends don’t really want to know. For years I entertained the idea of visiting a prostitute, just to see how well i could function. Eventually i did. It took several expensive visits until I had enough calmness to determine that I would be able to have a limited amount of sex. Enough to determine that I was impaired but not enough to get an implant. Then I had to find a girlfriend. Good luck with that when your confidence is destroyed. Good luck being respected in the church as an unmarried single man in your late 30’s whose life is passing him by. And all the wonderful women who you let go because you don’t want to disappoint them. Women who later resent you, hate the rejection and not understanding why, date your best friend out of revenge. Have fun trying to save the massive amounts for an implant in a country that does not cover it with insurance. Enjoy all that debilitating self doubt and depression suddenly sneak up on you when you are out with friends or meet new women. All that contempt or condescension from people who cannot know why you are an attractive man who turns down beautiful women. PD is a walking nightmare on steroids and it presents massive challenges to a Christian.
Thanks for sharing your heartfelt reaction to my piece, Marcus. I can empathize with your struggle — can’t imagine how I would’ve dealt with this if I had not had such a supportive wife. I did find a very supportive doctor who specialized in male sexual dysfunction — and who had a good “bedside manner”: he was honest and human. That made a huge difference for me. My PD is currently “in remission”; I’m sure that’s not the correct technical term, but the bend has “eased” to a point I’m comfortable with and seems to be stable. I found ultrasound very helpful. I wish you well; may you find a path toward treatment and, just as importantly, a path toward companionship.