I recently was part of a documentary called “The Truth of My Sex.” It was produced by the BBC and broadcast here in the US on the Oprah Winfrey Network. Although I have done documentaries for PBS, National Geographic, and even the Discovery Channel, I have never gotten so many e-mails that made it possible to invite men from around the country to come and join HEA in Chicago at this year’s conference. Call it the Oprah factor….

These e-mails almost always speak to the shame, isolation, secrecy, and fear these men have about their genital difference. Many of them report such poor medical care that they avoid doctors completely. Often, they avoid relationships because they don’t know how to tell a prospective partner about their genital difference. Lingering resentment toward or alienation from their families can add to their lack of support.

Some of these people come to the conference. More about them in a moment. Others cannot face the idea of standing in front of other people and admitting to their genital difference, even knowing that they are at a conference full of men who share that difference. The fear and the shame are so deep, the secret so carefully kept for so many years, that they simply cannot attend, even though they want to and they know it would be good for them. Sometimes they will come in another year; sometimes they will ask to be dropped from the mailing list because the reminder that someone “knows” about them is too much to bear.

The ones who make it to the conference, the ones who face their fears and deal with how frightening it is to imagine talking about something they have kept hidden for so long, almost universally have the experience of the greatest relief they may ever have known. To hear other men telling a story they thought was only their own; about the family shame, the scary hospital memories, the teasing from other kids, the intrusion of multiple genital exams. As well as the stories that bring a smile of recognition: peeing on the toilet seat, always looking for a toilet with a door and a lock, remembering to drink a lot of cranberry juice. This experience of belonging, the one thing that has been impossible to achieve previously in their lives, is finally theirs. What a relief to be surrounded by others who know what you’ve been through without having to go into an uncomfortable explanation that might never be really understood .

Hypospadias is the most common congenital difference in human beings. Epispadias is more rare. There are millions of men living with them.

I know that coming to HEA can literally be a lifesaver. When I was a young doctoral student in 1984, I chose to appear on television to talk about genital difference. I was told by a researcher who had studied more people like me than anyone had before that I was the first he knew of who was willing to be seen and known as (what it was called then) a hermaphrodite. I did it not only to reach out to other people who had been born like me, and suffered as I had, but also to reduce my own sense of stigma, to stop feeling that I could never tell anyone and that if anyone did find out, I would simply die of embarrassment. I couldn’t have that hanging over my head, so I took control of the secret and let it out on national television.

So many people look at the HEA website. So few ever come to a conference, let alone join this organization.

If what I have written here has touched you, please come to a conference if you never have. Please write to the doctors who have treated you and encourage them to tell their patients about HEA. If you know someone with a genital difference who is still in isolation, please invite them to a conference. And please support HEA by becoming a member; it is so inexpensive in comparison to the good that this organization does for so many who come and have that great moment of belonging, as well as those who can look at the website but still believe that they can never let themselves be known.

Question:

As an adult male with hypospadias, I’m now facing having to go in for some surgery again after many years of staying away from hospitals for things related to my penis. As the surgery date gets closer, I find that I have a great deal of anxiety and emotions coming up, as well as many fearful thoughts of all the things that could go wrong. I’ve even thought about canceling the procedure. What tips can you give to help deal with the anxiety and stress leading up to a surgical procedure that has many bad memories attached to it?

Dr. Tiger Responds:

When any of us have to go back for surgery after many years of being free from surgery, we have to face the feelings that were last dealt with at the time of the previous surgery. So, if your last surgery took place when you were 13 years old and you are going back for surgery at 30 years of age, you have a bunch of feelings of a 13-year-old to go back and deal with.

The question refers to “a great deal of anxiety and emotions.” As adults, we want to feel in control of our lives, involved in our own medical decisions. As children, even as teenagers, many of us were not. Thus, the feelings that come up are those of a person not in control of the situation, developmentally much less well defended than the adult you are now. The fear can be great enough, and unmanageable enough, that we can make a poor decision and just cancel a procedure that we decided was necessary before our emotional unfinished business came knocking at our unconscious back door. This unfinished emotional business is retraumatization that is triggered by the upcoming surgery. Separating what is real right now from what isn’t happening right now and did happen back then is very important to making sense of how to contain the feeling of out-of-control emotions. This doesn’t mean that simply writing down the story of what happened to you when you were a kid is going to get you in control of your feelings and prepare you for adult surgery. To prepare you for adult surgery, there are good steps to take that will help to keep the past out of your current experience and that will give you both the tools to deal with feelings which occur and the chance to have a surgical and hospital experience that is healthy for you and doesn’t add to the trauma you have stored up from previous bad experiences.

Get someone on your team

Whether it is a spouse or partner, a best friend or family member, find someone in your life who knows your story, who knows what you went through as a kid, and who can help to keep you clear and calm as you approach and go through your procedure. If you don’t have someone like this in your life or just don’t want to go through that with him or her, then employ a therapist who is familiar with preparing for surgical procedures. Your doctor or hospital ought to have a referral for that.

Talk through your past, and learn about the present

The job of your support person, whether friend, relative, or therapist, is to be with you as you narrate what you went through in the previous hospitalization (tell the story two or three times in the weeks approaching the surgery) and to help you to relax as you recount the story and make sense of the differences in your life now versus then. If questions come up about the procedure, the hospital, or any aspect of what you think may happen to you, then instead of just making things up out of your fears, call the doctor or surgical intake nurse at the hospital to get some real information. You should be able to collect enough facts to be very clear that you are choosing this surgery because you know everything you can about it and you are sure that given your options, surgery is your best choice. Confidence in this is necessary so that nothing that comes up when you actually go to the hospital can send you back into the mind of the 13-year-old who is just responding in mortal fear. That is what all this preparation is about: to keep you aware as the adult in charge of what is happening to you, to prevent you from feeling out of control in a way that puts you in fear.

Visit the hospital in advance

If your “team member” can go to the hospital with you in advance and help to walk you through all that you will see when you go in for your procedure, then it will be familiar instead of strange and frightening. The admissions staff and your doctor can help to arrange to show you the steps you will go through in advance, starting from walking through the door, going through admissions, even what your room will look like. The sights, sounds, and smells of the hospital can trigger memories you might not have been aware of in your sessions with your team member. Making a visit in advance can help to reduce any kind of last-minute surprises you might experience when you go in for your surgery.

Have your support person with you on the day of the surgery

If at all possible, have your team member with you on the day of the surgery, at your side as you ride to the hospital and go through admissions, and even with you in surgery prep. Ask if he or she can stay with you until the last possible moment before surgery and be present as soon as possible after you awaken in recovery. Your support person will have been your reassuring guide for the last several weeks and can be that for you throughout this adult surgical experience. She or he is also your witness, so that as you reflect on this procedure after your hospitalization, your support person can help you to remember this experience as one for which you were well prepared and for which you had support that was as close to ideal as possible before, during, and after the surgery.

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.