Feeling Freaky

Friday, June 06, 2014

Question

Dear Patrick:  My penis has been a source of humiliation my whole life. I had so much trouble in high school from other guys making fun of me, beating me up, bullying me, calling me names, that I got permanently excused from gym class and had permission to use the bathroom in the nurse’s office.  It’s a weird problem with a long name—hypospadias. There is a hole below the head of my cock, and that is where the urine comes out. It doesn’t come out in a solid stream, either, it is like a spray. When I get erect, my cock has a curve to it, and I don’t know if this is related or not.

Every now and then I get so upset about this I go see a new doctor and ask if this can be fixed. Some doctors say yes and some say it’s not worth it. I’ve heard terrible stories about guys who tried to have surgery to get a urethra constructed. They wound up with scar tissue and their cocks still don’t work right. Of course the plastic surgeons want a lot of money and they all claim this goes smooth as a whistle and not to worry about a thing, but I don’t trust them, it’s not their penis that has to get chopped up, is it?

You might think this is a little thing to get upset about. Maybe it is. I don’t have cancer, after all. But I get so tired of just not fitting in, not being normal. I get tired of having to use the stall instead of being able to use the urinal like everybody else at work. I know my co-workers think I’m an odd duck. I have to hold my penis at a strange angle to get the urine into the toilet, and sometimes I wind up cleaning up the stall because I don’t want anybody else to know what is going on. I’ve been reprimanded for spending too much time in the bathroom. The only person I ever told wound up laughing and making fun of me, so I just resolved I would never tell anybody else. I don’t want pity and I definitely do not want to lose another friend because they have to ridicule me.

I’ve never had sex because I can’t imagine how a woman would react to my weird penis. I don’t want to explain it. Who could get turned on to a guy who has to make a speech about a medical term he can’t even pronounce? I am so angry that I have to cope with this problem. I don’t understand why I was born this way, and I don’t understand why there is no medical solution. We have technology to do all of these amazing things, but this simple problem, we can’t seem to fix, I don’t even know if there is any serious research being done to prevent more little boys from suffering.

Answer

I can tell you are feeling really bad about yourself, but you are not a freak, and I refuse to call you one. You were born with a small physical difference that other people have over-reacted to because you were unfortunately born in a society that is C-R-A-Z-Y about sexuality. So-called “normal” people are often ashamed of their genitals, don’t fully understand how they work, and feel afraid of the powerful urges that emanate from them. So of course if they run into somebody whose genitals are different, what a great opportunity to … learn compassion? No! What a great opportunity to step all over that person and feel better about themselves as a result! Yeah!!

            To paraphrase the great and grammatically challenged poet e. e. cummings, “humanity, i hate you.”

            It’s apparently a little difficult for nature to create a penis with a urethra that runs smoothly down the center and exits at the tip of that organ. It’s estimated that about 4 or 5 out of 1,000 boys are born with hypospadias, which means the urethral opening is on the underside of the penis. (One support group raises that estimate quite a bit to more like 4 in 105.) The urethral opening in men with hypospadias may be located near the head of the penis, in the middle, or as far back as the scrotum. Most of the time, the condition is corrected shortly after birth, sometimes with a series of operations. There may be a curvature of the penis during erection that also needs to be corrected. Circumcision is not recommended because the foreskin may be needed for skin grafts.

            Yes, there is research being done on hypospadias. The Centers for Disease Control is currently conducting the National Birth Defects Prevention Study. They have found that mothers who are overweight and mothers who are taking certain hormones seem more likely to have sons with hypospadias. You can find out more by looking up “hypospadias” on the CDC’s web page.

            As you already know, there is no guarantee of a good surgical outcome. Much depends on the skill of your surgeon and on the structure of your unique physical problem. I am curious to know why your parents did not have this corrected immediately. The condition tends to run in families. Maybe someone else in your family had already dealt with a differently-placed urethra and felt it was not a big deal for him, and did not want to put a child through surgery. For now, I am more concerned about your poor body image and low self-esteem, the social isolation and lack of touch in your life. I think if we could get you to a better place in these areas, you would be in a better positiion to make up your mind about seeking medical treatment.

            The first step would be to accept the fact that this is not your fault. You are not being punished. Nobody else should be punished for this, either. Some of us are born with medical challenges, and we don’t always know why or how to treat them. It is a really difficult part of being human and having a body. The fact that you are going through a painful challenge does not mean, however, that your body deserves to be rejected. It doesn’t mean that you have to be cut off from joy or love or happiness. I know this probably sounds impossible or sappy, but I swear it is true: experiencing pain from a disability can make you a better person. You can become a kinder, more sensitive, smarter, more helpful, gentler, more attuned person. You can actually become someone who helps others to heal.

            How the hell does that happen? Well, first of all, it happens by realizing that you are not so special and unique. As the Buddha told us, all sentient life suffers. It is a universal fact of all forms of awareness. Once you know how some other life form suffers, you have created potential ground for empathy and understanding with that life form. Maybe that will never be acknowledged. Maybe it will even be rejected. But you don’t have to accept that rejection. There are forms of meditation you can use to send healing energy to any person or other life form that is experiencing pain. It is surprising how much this can lift your own pain and transform it into something positive. I recommend the work of Pema Chodron, a Buddhist nun who suffers from severe chronic fatigue and pain. She is much better than I am at explaining how to turn personal pain into growth.

            I am not recommending Buddhism per se. In fact, I am not a Buddhist. I do not agree with many of this religion’s basic assumptions. But I have found that Buddhism is adept at confronting certain unpleasant realities that many other sects skate around. I also find the idea of reincarnation oddly comforting since I am so far from being perfect or figuring out all the things there are to know about being a good human being. If I really do get to come back several more times to absorb a lot more knowledge, that would be a big relief.

            Making contact with other people who know what you are going through is another crucial step. You have assumed that your problem is such a strange, weird one that nobody else could possibly understand you. But that isn’t true. It is actually a pretty common problem. One group compares it to having red hair. It’s just that we live with a social taboo on discussing anything to do with sex or genitals. If we had a similar taboo on skin, people with acne would not be able to leave their homes. And they would all be convinced that they were the only one who had this awful, disgusting, disfiguring condition. There would also be very little medical attention paid to developing treatments for it. Sound familiar?

            The best way to find support is to do an Internet search for support groups. I was able to find a large one pretty quickly, but I don’t know if it will be to your liking. It is called the Hypospadias and Epispadias Association, Inc. (HEA), www.heainfo.org. They have education for families and people who have these conditions as well as on-line, anonynmous support groups and chat lines. Seems like it’s worth a try. I’m sure there is a lot more going on if anything about this organization puts you off.

Just remember that any organization needs repeated effort to develop a relationship. Give it more than one try. Groups have their own cultures and familiar faces. You need to be prepared to go at least three times, sometimes more often, before you decide you don’t belong or it’s not friendly. Make a point of speaking to people. If you show up but you don’t speak up, nobody has a chance to get to know you, so they can’t connect. You are not used to being social. You are used to protecting your problem and hiding it. So if you are in a situation where you don’t need to hide, you could still feel unsafe and threatened. Be gentle with yourself. Even if you need to take small steps, reward yourself for ending the isolation and coming forward to look for human connection and understanding.

This isn’t just a matter of looking for people who will help you. It is also a matter of other people needing you. There is someone out there who needs to know that you exist, that you have survived, and that you are still surviving. We can save each other’s lives by raising our hands and saying, “I am part of this community. It has been really hard to live with this, but I have done it. I’m still standing.”

            If this sounds too overwhelming, maybe you need to start with a supportive situation that is just one-to-one, with a professional who is going to be devoted to serving your welfare. There are lots of therapists out there who are well-trained in working with people who have physical difficulties. You obviously want someone who is comfortable with the topic of sexuality and able to work with you on social skills. (I think the latter is probably more important than the former.)

            When it comes to sex, I think you have cut yourself off from a potential source of pleasure far too soon. Many men with hypospadias are able to enjoy intercourse. Women can be quite forgiving when it comes to the frailties of the human body. Of course, there are shallow women who only want young, well-to-do, handsome men who can fulfill their Kim Kardashian fantasies. But you would have to be quite crazy to pick somebody like that! If you pick a woman who is nurturing and kind, someone who is realistic and decent, and someone who also likes you, you are ahead of the game. Women like that care more about how you treat them than they do about a perfect male body. She will want you to listen to her problems and enjoy activities with her. She will want companionship—shared meals, watching movies, going for walks, loving time spent with family members and pets, hobbies like gardening or garage sales, perhaps. Sex is on the list too, but she probably won’t want a porn fantasy. Her idea of good sex might be very different than the image that your fears are projecting and telling you she wants, to make you feel like a failure before you have even been able to try.

            Don’t forget that sex is something that two people create together. It’s not something you do to her, which she then stands back and judges. She has input into what happens, she gets to have access to your body just as you have access to hers. Both of you need to be able to trust each other. Both of you will be vulnerable. Neither one of you will be perfect. Sometimes the best sex happens between two people who are able to forgive each other for their flaws come to bed with a sense of humor and a lot of mutual affection. When you care more about your partner’s pleasure than you do about your own, you are becoming a good lover. And I think you probably are that kind of man. You don’t sound like the kind of guy who wants to use or exploit another person for your pleasure.

            Please feel free to write back to me if you have more questions as you continue to look for solutions. I know this is a tough card to be dealt. No brief answer in an advice column can adequately address the complexities of the whole problem. So please do seek out consultation with other experts, and also with other people with hypospadias whose judgment you respect. I look forward to hearing from you again.