Not all men are born with penises. And the penis is not the center of every man’s gender identity or sexual life. Plenty of men get as much, if not more, pleasure out of prostate stimulation or other oft-neglected erogenous zones than they do out of their penises, and so focus their sexual play there. A few men even choose to have their penises removed, not as part of a transition in their gender identities, but because they are not comfortable with their members, instead focusing on other parts of their bodies or minds as sites of their masculine identities and of erotic pleasure.
But for the vast majority of men born with penises, these organs are almost everything—not just the core of their sexual experiences, but the seat of much of their senses of self and self-esteem. So naturally, when these men lose part or all of their penises to conditions like cancer or injuries, it can be devastating.
Penile amputees often report feeling severe anxiety and depression, usually linked to senses of emasculation or concerns about their ability to be sexual, to form and maintain intimate relationships. According to a few limited studies on partial amputees, just over half can still get erections. But because a penile stump often lacks what are usually the most sensitive parts of biologically male genitalia—the foreskin, frenulum, and glans—they rarely feel pleasure during penetrative sex and often cannot maintain erections for more than a few minutes without medical assistance. Nor do they often get much out of oral sex, whether flaccid or erect, or any other form of penile stimulation. The inability to have the kind of penis-focused sex they’re used to leads many partial amputees, and even more full ones, to struggle with, and often to give up on, sex.
We rarely hear about these struggles in part because penile amputations are relatively uncommon. Most penile amputations are the result of penile cancer, a rare disease that strikes only about 2,000 men in the U.S. every year and that doctors are getting better at treating without resorting to major surgeries. (Signs of penile cancer include sores or marks on the penis that do not heal or fade within a few weeks, unexplained penile bleeding, noxious discharge, tissue thickening or hardening, difficulty drawing back one’s foreskin if uncircumcised, and changes of penile skin color. It is most common in men over age 40.) A few result from physical trauma—injuries that severed or ripped off one’s penis and that are too messy for doctors to successfully reattach it, or after which someone could not find their penis for reattachment. (Even successful reattachments do not always restore full penile functioning or sensation.) One or two result from penile strangulation, when an object cuts off blood flow to a penis for so long that its tissue goes necrotic and it functionally dies, or severe cases of priapism, painful erections that last longer than four hours, that can likewise lead to tissue necrosis. And although this is almost unheard of in the U.S., in certain nations where ritual circumcisions are often performed with unhygienic instruments or by inexperienced or careless practitioners, this process can lead to penile amputations as well.
We also rarely hear about the lives of penile amputees because many view their diseases or injuries as too taboo or uncomfortable to think about. And the few public conversations that do crop up tend to focus on the purported powers of reconstructive surgery. Phalloplasty, pioneered by a Russian doctor using rib cartilage in 1936, often involves stretching out the remaining urethra and using nerves, skin, blood vessels, and muscle from a person’s arm or thigh to create a new phallus, often adding in an internal pump structure to allow them to artificially create erections. However not every penile amputee is a candidate for reconstructive surgery. And the majority of people with these new penises report complications due to urethral scarring and other types of tissue damage, as well as feeling dissatisfied with how they look. Most will only gain partial sensation in reconstructed penises; some will never gain any. So this procedure is hardly the universal, total fix many people may hope or believe it to be. Full penile transplants, another much-hyped solution for penile amputees, are also still rare and may involve their own complications.
Recently, a few people have started to come forward in the press, on sites like Reddit, and in private forums to share their experiences with penile amputation. Their stories help other amputees feel less isolated, and provide them with support and advice in coping with mental distress and navigating sex and relationships. Some get down into useful, granular advice about how to explore prostate or scrotal stimulation, among other forms of non-penetrative sexual play, find sensitive zones near surgical scars, and communicate about their condition and needs with a partner.
But relatively few of these stories or bits of advice capture the dynamic of life after a penile amputation from both sides of a relationship. VICE recently spoke to Ellis, a man who had half of his penis amputated in 2017 to treat penile cancer, and his wife Anne to discuss just that. (Both asked to use pseudonyms due to the stigma around penile amputation.) Every couple’s experience rebuilding their sex life after a penile amputation is unique, so Ellis and Anne’s story is not definitive or universal. But it is an honest and detailed look at how deeply such an amputation can shake the foundations of many couples’ sex lives—and how they can still find ways to maintain physical and emotional intimacy thereafter.
Ellis: Anne and I met in 1992. I was 16 and she was 21. Neither of us had had previous sexual partners. But from the start, we had a very active, adventurous sexual relationship. I would sneak over to her place on my way to school in the morning and we’d have a quickie. When I was out of high school, we’d go to parties and have sex outdoors and not really care.
Anne: We had sex in a car wash.
Ellis: Yeah, through the roof of a Fiero. We wound up having kids when I was 20.
Anne: I think we stayed pretty adventurous after that.
Ellis: Things started to slow down a little bit, but that happens.
Then we were actually on a vacation in Scotland in December of 2016 and we were having sex and I felt a sharp pain in my penis. After that, a little dot showed up on the head of my penis.
Anne: A red mark.
Ellis: It was only about an eighth of an inch in diameter. By January, it had grown to half an inch. By mid-February, it was almost a full inch. My general practitioner said he thought it was just a yeast infection, so he put me on meds for that. But it wasn’t getting better. It was getting worse at a faster rate. I finally went in [to my GP again] and they got an emergency call in to a urologist. He looked at it and I’m pretty sure he knew what it was right away. I was rushed over to a day surgery suite and they did a biopsy. It came back in three days and he said, “You have a squamous cell carcinoma.” They thought it was going to metastasize to the lymph nodes.
We were provided with two options: One was a penectomy [removal of part or all of the penis]. Another was [an experimental procedure that would preserve more penile tissue, but] was off the books in my mind, just for the fact that there was no guarantee [that it would get all the cancer]. I am the sole breadwinner for our family. My wife has been off work for 15 years as a result of a restrictive lung disease. My thoughts of leaving her alone and with nothing was the driving force for me going with the life-preserving rather than the quality-of-life-preserving surgery. My thinking was, let me take a chance on it maybe being a minimal removal.
Anne: Well, the other option sounded really painful and weird, but also experimental.
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Ellis: The urologist was gone for a week. But as soon as he came back...I went into surgery that night at 7 PM, and the surgery was done by 9-ish.
Anne: I don’t think we had a lot of time to digest what was going on. I knew life was going to change after the surgery but...I didn’t even think about the repercussions, because we hear the word cancer and we’re worried about life. And the doctor wasn’t sure how much he’d be taking.
When he first went into the operating room, I asked the doctor, “Is he going to stay overnight?” The doctor said, “Oh, no, patients don’t usually stay overnight for this. If you cut your finger off, you wouldn’t stay overnight.” And I was thinking, wow, this is a big difference from just cutting your finger off. I couldn’t believe the comparison was even made. Ellis ended up staying the night because the doctors didn’t know how he’d react to the anesthetic. But I was thinking, did you really compare this to a finger?
Ellis: I ended up losing half of my penis.
Because I wasn’t circumcised, I had some extra skin the doctor was able to play with to give me a bit of a reconstruction. Being within a group of very masculine-type of men in change rooms [like I am sometimes] and having to be nude was a real hard idea. The urologist actually said, “I’ll make you locker-room-ready.” For him to think of it that way—it was good to have that.
After the surgery, I healed up.
Anne: Which was rather painful.
Ellis: Having a catheter in was probably the most painful part. After I had that removed, I saw an oncologist—a specialist in lymph nodes—and they elected to do a double lymph node dissection. That surgery was just as bad. They put needles into the end of my penis, where the tumor had been in the penis—in the glans and into the urethra—and traced it to the lymph nodes [to test them for cancer cells]. That test came back clear. After recovering from that, I was clear to start back up with sexual activity again.
The first thing I noticed was the absolute lack of sensation. To think the head of the penis had that much sensation to it—that was the hardest part to understand. I’ve always been very penis-driven in sexuality, including masturbation. And masturbation was a big stress reliever for me when something would happen at work or whatever—that endorphin release in the shower or wherever. Now that’s something I don’t have. And I haven’t had that now in three years.
Anne: As far as arousal and feeling anything near orgasm, I don’t think he has that at all.
Ellis: Getting and staying erect is very hard to do, too [without any sensation and stimulation]. In the past we’d go for half an hour straight at times. Now, we’re lucky to get three or four minutes.
Anne: The doctor gave him Viagra to help. And it definitely works, but there are side effects: back aches and headaches. The next day he always has issues. So if we can do something more natural—yeah, a quickie is a quickie [but it’s preferable to side effects]. Ellis is a boob man. He loves my boobs. So I’ll tell him, “Touch my boobs! I know that keeps you harder longer, even if it’s a minute.” But some days it works well and some days it doesn’t. We also went to a sex store looking for something that would help him keep his erection for longer—and we did. Putting it on and off—it’s not that great for him. But it helps. You just find things.
We talked one time about him having surgery to enhance himself.
Ellis: One option the urologist provided was a penis pump that you install in the penis to inflate to help with erections. But it still won’t be the same sensation. It never went beyond talk.
Anne: When we did talk about it, my first thought was, if he’s not going to get any more sensation out of it, it’s not worth it to see him go through another surgery. That’s not fair.
Some days we’re both really there. Some days, sex doesn’t work at all. We’ve had to adjust to be happy with what we have when we have it. Which is really hard, actually. I think harder on him.
Ellis: Even having sex with Anne...You know, I’m trying to be there for her. But you move the wrong way and you don’t even know if you’re in anymore. In the worst-case scenarios, it’s like just going through the motions. But you don’t even know if the motions are working.
Anne: He has felt bad about it. But I say, “You can’t feel bad. You have to take what you can get. And if we’re the king and queen of quickies from now on, then that’s what we are.”
For me, one of the big things that changed was oral sex. I used to enjoy that with him. But now it’s...useless? Because he’s not getting what he used to get out of that. There’s no feeling.
Six months after the penectomy, when we were at a follow up, the doctor said, “Oh, your penile sensation may come back. Or, it may not.” So, you have a little bit of hope.
Ellis: He did say that it wouldn’t come back like it was if it did—but that I should be able to regain some kind of sensation. But the only sensation I’ve gained back is a sharp pain. That’s one of the things Anne worries about when we try to have sex—that there’s going to be pain.
Anne: I don’t know if the doctor was just trying to give us hope or whatever.
Ellis: This isn’t something where the nerve is miraculously going to grow back and one day you’re going to have sensation. Knowing it’s never going to come back...It does affect you.
Anne: When he realized he wasn’t getting sensation back, he went through a pretty angry stage. That’s fair, you’re allowed. But talking about it was really hard on him. He could tell me things. But I don’t think I truly...I’m not a guy. I want to understand, but I don’t fully. I remember him going through all of these emotions and depression. He was a little hard to live with. I had to be understanding, though, of course, because he was going through something he couldn’t control.
Ellis: The health system did fail on the mental side of follow-up care. No counseling has been provided. I have found one forum for men with penile cancer. But I had to separate myself from it, because I read all these stories and they were exactly the same as mine. Then you realize these are three or four years old, and now these people are gone, [they're not posting anymore]. I’m sitting here at year three.
I’m actually going in for a follow-up surgery in the next couple of months to redo parts of the surgery. Which means I’ll be losing even more of my penis. So to think, is this now an ongoing surgery, where they’re just going to keep hacking and hacking?—it’s difficult.
Anne: Some guys talked about how their wives left them and stuff like that. And Ellis is kind of worried about that some days. I’ve always said, “I’m not leaving. I’m here. I will be here for you.” We’ve talked about going to therapy. But we chose not to. Looking back, maybe we should have. But I wouldn’t have even known where to start to look for someone for this.
Ellis: I didn’t really find a lot of guidance about how to navigate sex from people online, either. A lot of stories came from older people, and sex wasn’t a regular occurrence for them. A couple of people said manually stimulating their wives was enough for them. I’ve tried to integrate that into our relationship. Unfortunately, Anne is extremely ticklish and we get to the point where I’m getting aroused doing things to her, then she’s like, “Wait, stop, stop.” As soon as she says that, it takes whatever I’ve been able to build up to and it just blows away. I can get very aroused and then she tells me to stop—it’s game over. To get back to that point is near impossible.
Anne: We’ve had to learn how to communicate differently. When you’re in your 20s, sex comes naturally. Now we’re like, okay, this is what’s going on. And it’s definitely an ongoing process.
Ellis: I haven’t found any parts of my body that give me the same pleasure that I used to get from my penis so far, either [like some people do]. But we’re still in that exploratory stage. Just Anne being more open with sex brings me pleasure right now. She didn’t really say much before.
Anne: I’m not an initiator [by nature].
Ellis: Yeah. That’s one thing that has changed now. I’ll come home from work and she’ll flash me. Which helps. She’s done things out of her comfort zone in that regard.
The need to have that [sexual] physical contact keeps pushing me forward. For Anne, it’s less important. Cuddling and stuff like that is probably enough for her. But we’ve had our challenges in that area, too, because of Anne’s condition. We have a medical bed for her and I’m on a single bed, so cuddling—we call it laying across the Grand Canyon.
Anne: We still try, because humans need that connection. It may not be as regular as it was once. It may not be the same. But we’re still able to connect.
If Ellis said, “I don’t want to have sex anymore,” I’d be a little disappointed, definitely. But I’d be like, “I understand why. It’s your medical issue. I’m not going to push you.” But because it’s him saying, “I still want to try,” I’m happy to try. The fact that he doesn’t get as much out of it as I do makes me sad. It makes me feel a bit guilty. But that connection is definitely important.
Ellis: I’d like to say things are getting better. But I don’t see them getting better. So we’ll keep doing what we’re doing. And hopefully we’ll get to an age where sex isn’t as important anymore.
And I’ve found other things [to put my energy into and draw comfort from]. I’m a speed junkie. We bought a sports car so we could have a vehicle we could use together. That’s been a connecting point for us. We’ll go for a drive on the back-country roads or something and just have a little fun with the car. That has replaced part of that stress relief [that I used to get from sex and masturbation] for me, because I can just get in the car, drop the top, and go get some adrenaline out. And she enjoys cruising along and will sometimes pop behind the wheel and have a little fun. That’s what we can do, is finding other ways of staying connected to each other.
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This article originally appeared on VICE US.