Question:

My teenage son has an epispadias. He is 15 and popular and becoming quite handsome. He is shy around girls and I wonder if his epispadias is the reason. I want to talk to him about this but can’t find the words. We are a pretty open family but I am sure you understand how sensitive this topic would be for any teen. Any suggestions?

Dr. Tiger Responds:

Anyone with a genital difference is going to have that difference first and foremost in mind when considering intimate and sexual relationships. You don’t have to guess why your son with epispadias is shy around girls. Talking about this is very emotional since shame, rejection, fear of loneliness, humiliation, and loss of privacy (the big secret his peers don’t know about) are all at risk. Anyone who approaches your son will have to be talking a lot about all these fears before he will be able or willing to validate them as his own. As a parent, you have to be sensitive to realizing who your son is closest to and would be able to open up to about all this. It may take several attempts making it clear that you (or the trusted adult) is ready to be helpful, but it will often include the adult saying all the things the teen can’t say first, since he is struggling with the words as much as you are. Telling him his story makes it easier to admit to it, and makes it clear that he isnt alone with that understanding and that set of fears. Offering that the teen might be able to talk, at least online, to an adult through HEA who has been through similar issues (somebody like me to whom he won’t have to explain all this!) may also be a great relief. Peer to peer can be very powerful, but only after a loving parent has made it clear that its safe to have those conversations.

For many men, their penis is so much more than just a urinary and reproductive organ. It’s their “little buddy”; it’s their boredom reliever; it’s the thing they can’t wait to show off to whomever they are able to pick up for their next sexual encounter. Many men give their penis a separate male name, as if “Herman” and they are going out to search for a date. Men feel they can wake “him” (their penis) up with a few thoughts or images, or even a light touch of their own hand or someone else’s. Men joke that the penis has its own “brain,” and sometimes thinking with their “other head” gets them into situations they would have avoided if they were thinking with the head on their shoulders. This “disembodied penis” psychology is very common in men.

But it is significantly less common in men who have had surgery on their penis, especially if that surgery has left them scarred, with different response and functioning than a penis that was spared surgery would have, or with a different appearance or size than what they think other men have. For men with hypospadias or epispadias, these kinds of concerns are more common and may lead to a sense of their penis’s not even being their own, more like it belongs to the doctors who made it. For them, the penis is to be hidden, kept secret instead of being shown off. Exposing the genitals to a potential new partner usually takes more trust and testing for a man with HS or ES. Thus fear of rejection develops, along with insecurity or even an internal sense of rejection of one’s own body and genitals.

Well, that won’t work. That complex of feelings won’t lead to a happy life or the chance for healthy partnering. In this article, I have no intention of trying to address the psychological issues that men with these feelings have to face (either on their own or in psychotherapy), other than to say that if you’re not doing well on your own, find a therapist who can help you with these concerns. What I intend to discuss here are some strategies for men who have been ignoring their penis to pay better attention to, or to be better “friends” with, their own penis.

First, this is the penis, these are the genitals you are going to have for the rest of your life. Unless you intend to have some kind of surgery, it’s not going to change. Since your body and probably your genitals have good feeling in them, it’s time to learn very well where that good feeling is, how to make that good feeling happen, and how to enjoy that good feeling first on your own and later with a partner who is interested in making you feel good.

Second, look at your body and your genitals. People generally are not comfortable looking at their bodies, let alone their genitals, but for men with HS or ES, looking at and knowing every detail of their body and their genitals are integral to their having a better sensory experience and developing the knowledge and confidence of their responses to teach to an intimate partner later on. So get a big mirror that you can see yourself in head to toe and a little mirror that you can hold in your hand to see parts of yourself that aren’t so easy to see standing and looking straight on. Like your back. And what’s between your legs.

Third, get out that paper and pencil and draw the front of your body, the back of your body, and your genitals. Now watch yourself touch every part of your body, and make notes about which parts felt good and which parts felt less good. Don’t skip any parts. After that, lie down, close your eyes (or don’t), and touch every part again. Make the notes again, and see if there are any differences in what feels good when you are looking at yourself in the mirror and when you are not looking and just touching.

You can keep doing this exercise and vary the situation by being in a hot bath, by using oil, lotion, or lubricant to touch yourself with, by using objects with textures or temperatures different from your own hand (always making notes and learning more about what feels good when), and finding out about the conditions under which you most enjoy sensual stimulation.

Of course, this will probably lead to self-stimulation of the genitals (masturbation), and it should. In this article, I am only wanting to get you to take the time to get back in touch with your whole body—to find out how much good feeling there is in all kinds of places on your body.

In the next article, let’s talk more directly about genital stimulation, genital mapping (that paper-and-pencil drawing of where and what feels good), and sexualizing the genitals you have. The goal here is for you to really enjoy, really know well, really see your HS/ES genitals, and just exactly how to make yourself feel great and how to show an intimate partner how to care for your body, probably differently than they may have paid attention to other partners’ bodies.

I remember an older patient I had been working with for a couple of years telling me a story about his childhood, when his mother was always upset with how wet the bathroom floor was after he stood to pee. She felt he just didn’t know what he was doing, and she charged his father with teaching the boy how to get it in the bowl. The father saw that he made a lot of spray and just told him to do the best he could or sit down. They never took him to a doctor or thought that what he had needed to be fixed.

I asked him if he had ever been told a name for the genital difference he was talking about or wanted to know what that was called. His answer was clear and simple: “No and no.”

There are times when naming something gives that thing a life and meaning that it would never have had without that naming. Sometimes that is good, but sometimes it isn’t.

Hypospadias, epispadias: medical-sounding diagnostic names.

Hermaphroditism, intersex, disorders of sexual development (DSDs): descriptive names, but each with a history and set of implications that can be really stigmatizing to the person who is so categorized.

Medical diagnoses typically imply a need for treatment. Descriptive names imply a category, a type, even an identity.

Like the patient I described above, most people, I think, just want to go about the business of their lives as a person without having to live under the weight of being “a hermaphrodite with hypospadias” or any combination of the above names. So despite all the current discussion about which of these names and categories are the most currently “correct,” let me offer up a simple guide to this nomenclature minefield.

Your medical history is your most private information. Your diagnosis is probably important to the doctor who cares for you, but that probably is about as far as that goes. You are not your diagnosis. How your diagnosis affects how you think about yourself, and how you talk about yourself and your history to your closest intimates, is much more important than getting that diagnostic title correct. There is a lot to say about this, but not in this short article.

Are you a hermaphrodite? Are you an intersex person? Sure, if that fits for you. The diagnosis gives credence to that idea, but if that isn’t how you know yourself, then it doesn’t fit, no matter what any expert or medical records may say. (There’s more here, too, for another time.)

Do you have a disorder of sexual development? If you believe that nature makes males and females, penises and vaginas, that either are perfectly formed or otherwise are “disordered,” then yes, you have a DSD. Science, with its wish for neat categories and deterministic reduction, likes “this or that and nothing in between” kinds of naming. Society and culture like this kind of binary definition so that we can function as a group with cooperative rules about who does what; men do certain things, and

women do other things. If those categories blur, it’s a lot of trouble for a lot of people.

Nature doesn’t care about science or culture or society or even religion. Nature came before, and will exist long past, all of those constructs that we have made up.

So, how do you want to name yourself? For me, I am Tiger.