I don’t know exactly when it happened, but I remember it was a summer night in our Brooklyn apartment. We were having the kind of low-key sex that longtime couples sometimes have. At a certain point, she grabbed my dick and bent it, smiling mischievously, all a joke. She was the type of person who was always pushing the limits to see what she could get away with. I can’t imagine why, but she did it. Twice. I remember it hurt, but I stayed hard, we kept going, and it was fine.
For the next month — our last month together as a couple — I noticed that whenever we had sex, there was a deep ache inside my dick. We looked online to see what it could be, and that’s when I first heard about Peyronie’s disease, which is when your penis develops scar tissue inside and can end up curving while erect.
I didn’t think I had it, though, and the whole thing remained just an oddity. One night at dinner she even joked to our mutual friends that she “had broken my dick.” We all laughed: That couldn’t be, right?
We eventually broke up, and a few months later, I started to notice I was having trouble getting hard, for the first time in my life. I had started seeing someone new, someone I liked, but my trouble keeping it up made me doubt my attraction to her and I ended up breaking it off. It was unnerving, but I thought merely circumstantial.
A month or so later, I realized otherwise. I was on a first or second date with a girl. We came back to my apartment, and in the midst of her giving me head, I came before I even thought I was hard. It was weird, and also hard to explain. We never saw each other again.
My penis no longer looked the same either: The last 80 percent was hard but the first 20 percent didn’t seem to be. It was angled to the upper left and narrower toward the bottom, like a wine glass.
That’s when I remembered Peyronie’s disease, Googled it again and started to freak out about it to a friend. He was sympathetic but figured it would pass. He told me I should just start eating a ton of pussy and try to relax, but the latter was pretty much out of the question.
It was hard to imagine how I could ever have sex again. And even if I could technically function, would I still be any good? Would women choose a partner who was compromised? If my penis wasn’t as big or as hard or as potent as before, would that make me less of a man? I thought so.
I started to avoid sex, which only made me feel worse. Sex had been an important part of my self-esteem; it was life-affirming and an escape from overthinking and analysis. It wasn’t something I could just stop doing. One night, a coworker and I got really drunk and came back to my apartment. She got naked, while I kept my underwear on, suddenly terrified to take them off. I told her something like, “I can’t have sex because I’m injured,” which was a really bad way of putting it. We hooked up a couple more times, but I never took my underwear off. Nor did I ever explain why. I didn’t know how.
I was still a wreck a few months later, when I finally decided to go see my doctor about my dick issues. He referred me to a urologist who referred me to another urologist. The examinations were quick: a couple minutes to explain about my ex-girlfriend, and a couple minutes to let them feel around for the scar tissue inside my dick. It was weird at first, but now, the thought of a doctor manhandling my junk barely inspires a reaction.
The urologists told me my Peyronie’s self-diagnosis was correct and that I would need to bring in photos of my hard dick to confirm the curvature was drastic enough for insurance to pay for treatment: $45,000 worth of injections of a drug called Xiaflex into the scar tissues in my penis. I delivered the dick pics in person the following week and found out I was covered. The urologist recommended I bring “stimulus” to the next appointment for my first injection, and gave me a package of ED medication to take beforehand.
Even with medication and porn, I couldn’t imagine keeping it up while a middle-aged physician stuck a needle into my penis. It was horrifying. I dragged my feet and avoided going back to the doctor’s, but I continued to worry about it. Just looking down in the shower could bring on despair.
Eventually, I broached the issue with my parents. We’d always had a close relationship, but talking about my dick in such detail was definitely new territory. While my mom was of the opinion that it wouldn’t matter to women — basically, that sustained intercourse, on its own, isn’t that important to women — my dad was flooded with compassion. He said he would have been utterly destroyed by this news in his late 20s like I did. They both agreed I should get a second opinion, and my dad’s golf buddy recommended someone out in middle-of-nowhere New Jersey.
One morning soon after, I drove out to sit in my third urologist’s office, where I joined another waiting room full of white-haired 70-year-olds. Once this doctor confirmed (again) that it was Peyronie’s, I was shocked by how adamant he was that I not pursue the injections. Instead, he recommended a low dose of Cialis to give me “good, strong erections” to help break down the scar tissue over time. Somewhat depressingly, he told me that in the 40 years he’s been seeing patients with Peyronie’s, a real cure hasn’t emerged (even though 7 percent of men have the condition). His honesty made me realize for the first time that there wasn’t necessarily going to be a way out of the situation other than acceptance. But I made an appointment with the renowned Peyronie’s specialist he recommended anyway.
During our first consultation, the specialist rattled off a history of Peyronie’s and the treatment options available. The next step, he said, was an ultrasound to locate the actual site of the scar tissue. He compared injecting Xiaflex to the tip of a very fine knife; you had to be very accurate to get the best results. I struggled to take it all in.
At the follow-up, a nurse injected me with a drug to make my dick hard enough to be scanned. I averted my eyes and felt a sharp, sustained prick followed by a tingling sensation as blood flowed to my penis. Minutes later I looked down to see a really, really hard but severely-angled dick. They ran the ultrasound machine up and down my shaft, discussing the location and size of the scar tissue and rate of blood flow.
Up to this point I just assumed I would be getting the injections, which seemed like the only path to normalcy. But after the examination, the doctor explained that even though the next step would be the Xiaflex injections, he wasn’t confident I’d see substantial improvement.
As he explained the course of treatment, the scenario forming in my mind was horrifying: Regular cycles of injections for 36-plus weeks. “Stretching” my penis for 30 minutes, four times per day using what the doctor described as a “Marquis de Sade-like instrument.” When would I have the time for all this? That’s not exactly the kind of thing you can do in an open-plan office.
Worst of all, I’d have to refrain from sex for the better part of six months and be careful not to over-bend my dick during the “stretching.” Otherwise, I’d risk penile fracture, which is as bad as it sounds: the membrane bursts and the whole thing fills with blood like an eggplant. Surgery would be the only option if the injections failed, which sounded even worse.
Leaving the office I realized with surprising equanimity that there was only one way forward: to do nothing. The Cialis from the previous doctor seemed to make sex possible (even though it cost $250 per month), and I felt ready to explore life with my current dick situation before going under the needle or knife.
I used to desperately wish that I had uncovered this when I was settled with a partner who would understand. But for now, I’m finally accepting this new normal, on my own. At the very least, it’s gotten easier to talk about with sex partners. The reactions are varied, although there are always a lot of questions. Some of them are even outraged that my ex-girlfriend did this to me. At one point, I almost felt that way, too. Now I don’t really associate my current condition with her, even if she’s part of the origin story.
I used to worry that my anxieties were eating up my sex drive, and while I’m less likely to pursue one-night stands, I still feel sexual. Certain positions seem to be off limits, and I’ll continue to hide the Cialis bottle in my medicine cabinet for the foreseeable future. Recently I’ve had sex where I’ve been able to forget my shame and self-consciousness almost entirely. Better yet, I’ve had sex where we’ve both had great, satisfying orgasms. For a while there, I was worried that would never happen again. Now I know it can, and it will. I’m excited about embracing my dick again, broken or not.
– As told to Zak Stone
