How an Extreme New Bend in My Penis Changed Everything About My Sex Life

Penises often bend up, down, or to the side. Usually, curvature is just the result of natural variation, and is totally inconsequential. But at least 10 percent of people with penises will at some point in their lives develop Peyronie’s disease. 

Peyronie’s is a build-up of scar tissue in the penis that doesn’t stretch well during erections, creating a tether that often causes dramatic bends. (When scar tissue forms in circular bands, instead of a bend, it may cause hourglass-like indentations or partial-to-full penile narrowing, and reduce the overall size of erections.) This tissue is often palpable; in some cases it feels like bony nodules. 

While most experts suspect that physical trauma—either one big blow to the penis, or the gradual wear and tear of sex, masturbation, and daily life—triggers the onset of Peyronie’s, no one’s sure why only some people develop the condition. However, whether it sets in suddenly or gradually, Peyronie’s always advances through an acute stage of one to two years of scar development, changes in bend or indent angle or direction, and, often, constant tender-to-throbbing pain caused by inflammation. It then stabilizes into an often painless, but lifelong condition.  

Once it reaches this stage, mild Peyronie’s—usually defined as scar tissue that causes a less-than-30-degree penile bend—rarely, if ever, causes problems in people’s sex lives. People with sharper penile bends and indentations and their partners, however, may find anal or vaginal penetration difficult to achieve, and painful once it does happen, because of the angles involved. Concerns about how people will perceive or react to their penises, or about the risk of further bending or damaging themselves during sex, often trigger or exacerbate anxiety and depression in people with Peyronie’s, making it difficult for many to enjoy, and leading others to avoid, sex. 

Although there is no full cure for Peyronie’s, early and consistent treatment, usually involving injections of substances that interfere with the formation of or break down scar tissue materials, and penile traction therapy to stretch out bends and limit any loss of length, can mitigate or reverse the development of severe curves and dents. (Some clinics and sites offer other potential treatments, including natural supplements like Vitamin E and shock wave therapies. But many have not yet shown any clear efficacy in clinical trials; while there is some promising research on shock waves and a few other therapies, the jury is still out on such novel approaches.) 

Yet, because awareness of Peyronie’s remains low, and people with penises are often too embarrassed or reserved to bring issues like this to their doctors, far too many people never receive treatment for the condition. In recent years, a few advocacy groups have formed to address this issue. (However, some ostensible awareness and education groups seem far more interested in promoting dubious or unproven treatments than in actual advocacy work.) Few actually share clear and detailed accounts of people’s experiences of life with Peyronie’s, though, leaving those looking for reference points high and dry. To address this gap in awareness and dialogue, VICE spoke to Don Cummings, one of the few men who’s public and vocal about his Peyronie’s, and his partner, Adam, about how they’ve managed sex with the condition. 

The following interview has been edited for length and clarity. At his request, Adam’s last name has been withheld to protect his privacy. This article contains a reference to thoughts of self-harm. 

Don Cummings: Eleven years ago, I started feeling pain in my nighttime erections when I woke up. I had a very positive attitude, so I thought, Maybe something weird is happening that’s making my boners bigger. Maybe I’m just having really powerful erections. One morning, I noticed my erect penis bending, around three-fourths up the shaft, about 20 degrees to the right. I was like, … All right. As the weeks went by, it bent more and more. 

A few years before, I’d had sex with someone who had a very curved penis, so I’d looked up what that might have been about and learned about Peyronie’s disease. So, as the bend in my penis worsened, I thought that’s probably what I had. 

Adam: We’d already been together for years by the time this developed. I’d never heard of Peyronie’s, but Don’s not shy about talking about things like this, so I’d seen and heard about what was happening to his penis. He told me he thought he might have this condition, so I Googled it, too, and was like, “Yeah, you should get this checked out.”

As soon as I started reading about Peyronie’s, I was worried about the future of our sex life. We’d had an active, good sex life for years. It was a big part of our relationship. I tried to be supportive and say, “Even if penetrative intercourse becomes difficult because of this, we can do other things sexually.” But we were both worried . 

Don: Well, I wasn’t worried about our sex life at the very beginning, because I could still insert myself into Adam. (I was usually the partner who inserted when we had anal sex.) It did hurt. The point of the bend felt sore, and like if I did too much to it, it would get worse. I’m not sure if that was true, medically, but psychologically, I was worried about damaging myself further. I quickly realized I probably couldn’t enjoy penetrative anal sex anymore, but I soldiered through it.  

Adam: We don’t hide things from each other, so we discussed those feelings as they developed. Don didn’t want to stop topping because he was afraid that I wouldn’t be sexually satisfied if he did. I tried to make him feel better, but inside, I was like, Oh, how is this going to go now? Ironically, we’d been having some of the best sex we’d ever had just before this started. 

Don: Yeah, that’s true.

Adam: That made this shift especially tough. 

Don: About six weeks after I first started to notice my symptoms, I went to a specialist, who quickly said, “Yeah, you have Peyronie’s disease.” But he assured me I had a mild-to-medium case. He gave me a treatment of Verapamil mixed with saline solution, injected into my penis (after I’d been numbed with lidocaine) every couple of weeks. You have to wait between them because your penis gets quite bruised. The goal was to break up the scar tissue plaques and try to straighten me out. The injections weren’t horrible. I could go home on public transit on my own after getting one. And from the spring to the fall of that year, my symptoms did get a lot better. 

But I was still in the acute phase, when the condition is always changing. Things got a lot worse after that. My penis started to bend to the left instead, and shrink. Then, I got what some people call “wobbly head,” where only the bottom two-thirds of my penis would get erect but the top was soft. It looked like a mouse head to me. It just wasn’t of any use. 

At that point, any form of anal penetration was just gone. We did oral and hand stuff together. But my penis really looked deformed. I was hurt and scared and I wanted to be very gentle with it all the time. Soon, sex for me became, “Honey, why don’t you stay close to me while I masturbate?” That was all I could really do with my penis at the moment. 

Adam: That went on for about four or five months. 

Don: I went back in for another round of treatments. During those treatments, I started curving upwards toward my navel real hard, like a candy cane. That was the hardest time for us. 

Adam: Don was clearly hurting both physically and emotionally, so I tried to put his needs first. I guess I put his needs before my own. He was always really generous about oral sex, but it was definitely one of the darker periods in our sex life, because whenever we tried to have any type of sex, it was so emotionally fraught. It was a reminder that things weren’t going well for Don. I definitely worried that we might just not have a sex life anymore.

We’d had an open relationship for our first few years together, which we closed off because as we got older we had less sex drive and we wanted to save it for each other. But Don offered to open things back up for me. I didn’t want to go back out with other guys, though. I just tried to rationally accept that, even if our sex life might not be great anymore, we otherwise had a good relationship. I’d also just started a new career, so I had a lot of other things I could throw myself into so that, while I was still worried about this, I wasn’t dwelling on it. 

Don: I’m not a self-destructive person. But there were moments when I was in the kitchen with a knife, thinking, Let’s just cut this thing off. This is ridiculous. I was depressed. I started drinking a lot—and you’re not supposed to drink during treatments. I thought this might be forever. 

How’d I get out of that dark place? Well, I stopped drinking. [Laughs] That helped. I tried to limit how much I would obsess over this every day, so it wouldn’t take over our lives. My second round of treatment also started to help with my new symptoms. 

Adam: Don took his treatment super seriously. He did anything the doctor told him to.

Don: Yeah, my doctor told me to use a penis traction device for up to six hours every day, and that the more I used it, the better it would work. He said I could walk around while I had it on, but it’d just slip off. So I’d spend a few hours in bed in the morning reading the New Yorker and a few hours at night watching TV with it on. 

Adam: Trying to get back to a health situation where we could have normal gay sex again really became Don’s job. And he did. He got to a point where his symptoms were manageable. 

Don: It took almost 20 months from my first symptoms, but, yeah, I eventually got back to nearly what my penis used to look like. Except I used to be poker-straight and now I had a little upward curve. But I told myself that I’d seen other guys who were a lot more curved. It wasn’t so bad. It was a small banana. I could still feel the band of constriction around the middle. But I could have penetrative sex again—although I needed Viagra to get fully hard. I still need pills for that now. Once we could have penetrative sex again, I felt a lot more hopeful.  

Adam: But who knows if or when we would have had to deal with softer erections and pills eventually in our relationship, even if Don never had to deal with this condition. Don does have a strong reaction to Viagra, though. 

Don: Yeah, all of those pills affect your blood pressure and your guts. Viagra doesn’t affect my guts as much as Cialis, but it does make me feel like I have a headache, or sometimes it makes me dizzy. 

Adam: When he started using pills regularly to be able to have anal sex, I told him that I didn’t want him to be super uncomfortable, so maybe we didn’t need to do that. But he wanted to try.  So we just had to test the dosages. 

Don: I’ve discovered that, for me, it’s all about when I eat relative to when I take Viagra. That means our sex has to be more planned now than it was before, which is a shame, but it’s how it is. And a lot of guys, especially as they get older, have to plan out sex around their pills more. 

I also still had a psychological fear of further damaging my penis. So, it was very easy for me to lose any erection. Just setting aside an entire Sunday to go for a walk in the park with Adam, have a relaxing time, not having anything else planned, and being well-rested before we had sex helped with that. I actually think it was good for our relationship in general. 

Adam: Oh, for sure. We started smoking pot before sex to help us too, because… 

Don: [Laughs] It’d loosen us up, yeah. 

Adam: We’ve become once-a-week sex men by now. But once a week is still pretty good. 

Don: We’re pretty tied into our Sexy Sundays now. 

Adam: Due to the remaining curvature of Don’s penis, there were really only two positions that worked for us for anal without causing me pain. For oral, too, I had to be in certain positions to comfortably work with the curvature. 

Don: Even before that, the only positions we regularly did were doggy with me from behind, Adam on his back with his legs up, and Adam on top. Adam on top absolutely went off of the table forever, both because of comfort and because of my concerns about damaging myself further. When someone’s on top of you, that poses the greatest risk of damaging your penis. But we had to do a lot more maneuvering to get into the exact right angles in our two remaining positions now. 

Adam: It took a lot of trial and error to get to the point where we understood all of the angles that worked best for us, and how to manage anxiety and pills. Sometimes we’d try things that just didn’t work, and we’d have to retreat to our own quarters for a while to process it. 

Don: It was two and a half years of experimentation. 

Adam: But we managed to get our nearly full panoply of sexual options back. 

Don: A couple of years ago, I heard about trials for something new called Xiaflex, which eats the collagen that makes up scar tissue, from my doctor. At first, I didn’t feel like I needed to try it, because it’d been a couple of years since my second round of treatments and I’d reached this point where, yes, I still bent a little, but everything was working. But after I wrote about my experience, a guy I knew told me he had Peyronie’s as well and he’d gotten this and it was great.

Adam: When Don told me he was thinking about trying the new treatment, I didn’t want him to do it for me. I wanted to be clear that I felt satisfied. But if he wanted to try it, I said he should. 

Don: But I do remember Adam saying, with smiling eyes, “But, if you think it’d help with…” 

Adam: [Laughs] Of course! Of course! 

Don: So, I tried it. The treatments were nasty. Everyone thinks their penis is rupturing internally, because it blows up like an eggplant after you get the shots. But after one round of four shots, my remaining band of scar tissue was gone—and I got back about a half inch of length that I’d lost by combining that with my traction device. I’d actually remained diligent in using that device, although only for an hour or two most days, while doing my emails or reading the news in bed, for years. I still use it every now and then because… You know what? At this point it might just be a security blanket for me. I don’t think I need it now, from a medical perspective, frankly. 

Adam: I’d noticed that the scar tissue band was still sensitive for Don. Once it started to go away, it quickly became clear that penetrative sex got better for him—and for me as well. 

Don: Peyronie’s disease does permanent damage. Some of it doesn’t go away, even if you get treatment. So, I’m sure that not everything is right in there. But I don’t notice it anymore. 

But Adam being on top is still off of the table, because of my concerns about getting injured.

Adam: And I’d be lying if I said I didn’t miss it. But that’s just one thing, you know? And this is what sex is all about, right? Figuring out what works for both of your bodies. 

If you or someone you know is considering self-harm, please get help. Call the National Suicide Prevention Lifeline at 1-800-273-8255.