Entry 1

8/11/10


I am a mix of emotions right now. I met with my urologist this morning for an examination of some unusual symptoms...



I am a 41 year old male born with peno-scrotal hypospadias. I underwent 4 surgeries before the age of 5 years old. The outcome was a wide sub-coronal meatus (opening) and an unresolved fistula at the original meatal site. The only memory I have of these surgical experiences is the intense fear I felt while a black rubber ether mask descended upon my face - THIS is my earliest childhood memory. Interestingly enough, I have no other memories from my surgeries; I’m convinced I blocked them out. The unresolved fistula has prevented me from being able to use a urinal like other males.



I grew up in a small, rural, upstate NY community. My parents never really talked with me openly about my hypospadias. They loved me very much but I suspect that they were uncomfortable with it and, likely, didn’t want to make me uncomfortable by discussing it. Yet, somehow, I always knew that I was different from other boys; I also knew that being different would make me a “target.” As a result of my hyper-awareness (both of myself and my surroundings), I developed many strategies for self-preservation at a very early age. My main objective was to “fly under the radar” and not draw attention to myself. But, as a human (i.e. social) being, this wasn’t easy. To help me accomplish my goal, I developed 2 selves – what I call my “social self” and my “true self.”



I am the king of acquaintances! I can be extremely friendly with all kinds of people but never really belonged to any certain clique and never – ever – let anyone get too close. I developed into a keen observer; I would always take my time to assess people and my surroundings before approaching anyone or engaging in conversation – I still do! Whether it was playing “forts” in the woods, sports, or camping with other boys, I always had to be conscious of my difference and where the closest bathroom was. I never had to pee outside when the other boys did ;) but always seemed to find a reason to excuse myself back to the nearest location with a bathroom! I also became obese at a young age and used my weight to keep others at a distance. Toileting in school was like planning a bank heist – it had to be timed just right so that no one would see me going in, taking care of business, or going out! And, showering in the high school years…ugh! They say the “squeaky wheel gets the grease;” well, the opposite is also true. I made sure I was a “good” (i.e. low maintenance) kid and a decent student - this enabled me to keep my parents and teachers at arm’s length! I spent years developing a “social self” that was the epitome of a conservative, self-less, humanitarian. But, that’s my “mild mannered alter ego…”



Self-isolation has a heavy price but it’s what I used to protect myself from those who couldn’t understand me or wouldn’t accept me for having hypospadias. After all, growing up believing (until I was 28 years old!) that I was the only one affected by this…how could anyone understand or accept me? Only I could really understand what it was like and accept my “true self!” After all…who could really love a “freak?” So, most of my life has been spent withholding the real me from the world - keeping others at a distance…constantly assessing and reassessing how much of myself to share with others…making sure that people never get too close to the truth. It’s exhausting! And sad…knowing that those who love me don’t even know/love the real ME (because I haven’t let them)! Trust issues…yeah, I’ve got them!



Letting my wife “in” when I was 26 years old was the hardest thing that I had done up until then. We had reached a point when our relationship was either going to take the next step or I would need to end it (in the name of self-preservation). Behind a veil of tears and shaking uncontrollably…I disclosed my “secret” to another for the first time. To my surprise and relief, she responded with support and love!



Suspecting that we would be battling infertility (damn, I HATE being right!), I started asking my parents more questions about my surgeries. I also requested copies of my medical records for my hypospadias related surgeries. For the first time, I learned that my “birth defect” had a name – HYPOSPADIAS – and that I was not the only one in the world who was affected by it! There were others?? Who?? Where?? I’ve gone nearly 30 years and never had an inkling that anyone else could have had this! Needless to say…I was floored!



However, life got in the way (as it inevitably does) and it wasn’t until I was 38 that I started facing my personal demons. It took the passing of my Mom (at age 59) for me to realize that life is too short! It occurred to me that I lived the first half of my life controlled by the isolation and fear of my hypospadias! It was time for me to reclaim my life!  My Mom was my main source of information regarding my surgeries, and now she was gone!  I did gather the courage to talk with my Dad more about that period of my life.  I was amazed to learn that my parents mortgaged our house to get the money needed to pay for my surgeries (as we did not have health insurance)!  Words can't begin to express how much that act meant to me...that they would sacrifice what little they had - for ME! This is also when I found HEA. For the first time in my life, I felt like I belonged! For the first time in my life, I didn’t feel different! For the first time, I felt that others truly understood my fears, my shame, and my sadness. I had lived under the dark cloud of hypospadias for too long! I made a commitment to myself to learn as much as I could about my demon and challenged myself to reach out to as many “brothers” as I could. I am an open book to my “brothers” and try to lead by example. My new mission was to make sure that no other person grew up feeling (or currently felt) as I did – needlessly! That’s why I became actively involved in HEA! As I began accepting myself, I started a process of “selective disclosure” to introduce close family/friends to the real me.



It wasn’t until 3 years later that I finally started addressing my weight demon. Now that I was opening up about my hypospadias, I no longer need my weight to shield me from society. This year, I made another commitment to myself (and my family) – to become healthier! This meant losing weight and exercising more. Though, at 336 pounds, I knew I couldn’t do it on my own. On April 14th, I underwent gastric bypass surgery. I am now down to 255 pounds and walking 2 miles 5 days/week. I am now healthier than I ever recall being!



Which brings me to today…I scheduled this appointment with my urologist because I had noticed a long, thin mass “floating” under the skin on the underside of my penis; I first noticed this in March of this year. I also started to notice that I was starting to leak a little bit of urine. I had hoped it would just go away (like that would really happen). I got distracted with my gastric bypass surgery and recovery shortly after that. In June, I started noticing blood in my semen. Again, I had hoped that it would just go away (since that course of action was so effective the first time!). After a month, I was still seeing bloody semen. It was time for WebMD! Cancer showed up on my radar – not good! Yep – it was time to break down and make the Urology appointment! Upon my arrival at the office, my “white coat syndrome” was in full effect! My anxiety was high and it showed. I tried to convince myself not to assume the worst and to just be satisfied that I will finally be getting some answers. Following my examination, my Dr assured me that this did not appear cancerous. He informed me that men with hypospadias have a lesser chance of getting prostate cancer than other men due to the androgens involved with hypospadias. Well, at least there’s a silver lining to having hypospadias! Though, he also said that the mass and the leaking was concerning. He really couldn’t say for sure what it was (it could be "calcification"?) or determine the integrity of my previous surgical “repairs” without performing surgery to examine my urinary tract from bladder to meatus. I have a lot of scar tissue and he makes it clear that it will make the procedure more difficult. He also advises that he will request the assistance of the head Pediatric Urologic Surgeon (who I have researched previously and am very satisfied with) in the practice. I believe that surgery is the right course of action at this point. He said the office will be in touch to schedule the procedure.



As the day goes on, the mixed emotions start to rise within me. I’m terrified of the emotional triggers that this impending procedure can aggravate. Will this course of action bring on “flashbacks” from my earlier surgeries that I had previously blocked out? The physical pain is scary but the potential emotional fallout could be so much worse. I’ve always been in control and this surgery threatens that. On the other hand, I have reached a point where I need to have my hypospadias “repair” looked at again. I know that it’s unrealistic to expect that the new “Mr. Johnson” would be pursuing a new career in modeling – but I am praying that I will, at least, have an outcome that will allow me to urinate while standing. God…what I wouldn’t do to be able to use a urinal! Pretty sad, huh? LOL



So…now I wait for the phone to ring…