Living With Hypospadias

John Filippelli

• Publisher: Palmetto Publishing
• Year: 2021
• ISBN:
  9781638372189
• Edition: 1
• Topic: Medicina
• Subtopic: Urología

Written by a man born with severe penoscrotal hypospadias, Living With Hypospadias is the first book to provide a powerful, in-depth look at the emotional and physical aspects related to living with this congenital urological birth defect. It features highly personal stories from people around the globe supported by insights from medical professionals. Hypospadias is estimated to affect approximately 1 in every 200 male births, making it one of the most common birth defects. Therefore, many people, including those born with hypospadias - as well as those who love them- and even the professionals who treat the condition will gain a deeper understanding of how hypospadias impacts men emotionally throughout their life.

1

My Story

Hypospadias has always been a part of my life.

While it certainly comes with physical issues, I also experienced overwhelming periods of depression, shame and anger. As an adolescent I had such a strong fear of doctors that I developed chronic anxiety that impacted many aspects of my life for many years. Now that I’m older and have faced many of those issues, I can see how hypospadias actually contributed to my personal growth. I’d like to share that journey with you now.

I was born in May, 1975 on Long Island, NY with penoscrotal hypospadias, chordee and retractile testicles.

Let me explain that. When I was born, the opening of my urethra was located on the underside of the shaft near the scrotum (penoscrotal) and my penis was bent completely downward (chordee - pronounced “kordee”) at a 90° angle. My testicles were mostly in the “up” position above my penis and would move (retractile) into the scrotum and back again, sort of like a yo-yo motion, depending on my body's position. There was also no proper meatus, or opening, formed at the tip of my penis.

As a result, there were serious considerations regarding my physical condition when I was born. How would I properly urinate? How would I have intercourse one day? These are two of many questions my parents and doctors had to consider. They needed to determine the best course of action because without surgical intervention, those basic human functions — and true quality of life — wouldn’t have been possible for me.

So at 16 months old, I had my first hypospadias surgery to straighten the chordee.

I’m told that finding a urologist on Long Island at the time wasn’t easy. Eventually though, through a referral from a pediatrician, my parents found a surgeon in the Bronx who specialized in hypospadias. The chordee was located at the mid-point of the shaft and when the penis was straightened during the surgery it pushed the hole opening farther back. At that point the hypospadias was still present but the chordee was corrected.

Recovery wasn’t pleasant, however. I spent two weeks in the hospital, restrained with four-quadrant restraints the entire time. My family was told it was to prevent me from interfering with the catheter that was used.

There were subsequent follow-up visits with the surgeon for the chordee surgery, and it was during the last follow-up visit when the surgeon said I had developed a double inguinal hernia. While an inguinal hernia is somewhat common for young boys, it complicated my situation. And required more surgery. So, at the age of two, I had surgery to correct the double inguinal hernia. That recovery was much easier and I actually walked out of the hospital the next day, holding my mother's hand. It was also during a follow-up visit for that operation that the doctor recommended we wait to do the staged hypospadias repair until I was a little older. For the next couple of years, I sat to urinate.

It wasn’t until 1979, at the age of four, that I had the staged hypospadias repair surgery. The surgery took place at Albert Einstein Hospital in the Bronx, and required that the urethra be rebuilt using my uncircumcised foreskin. It was a long surgery and to aid recovery, the doctors used a urethral catheter as well as a suprapubic catheter that went directly into my bladder. The doctors were concerned about infection, so this backup catheter allowed me to void directly from my bladder instead of risking infection with the new urethra. Despite this, I did develop an infection that necessitated I stay in the hospital for a month. My mother stayed with me the entire time. During that stay, the main catheter was removed, but the suprapubic catheter remained. In fact, it stayed for another couple of weeks after I returned home until I didn’t tolerate it anymore.

From what I’m told, I emotionally handled these early surgeries well.

In fact, my nickname in the hospital was “Mr. Sunshine” because I spent my time going to other children's rooms and encouraging them. “It's okay, things will get better!” “It's not so scary to have surgery!” I would tell the other children things like that.

I suppose recognizing the emotional aspect of medical issues was always in my nature.

However, there were still physical issues to contend with after this surgery. When I was finally released from the hospital, I had five fistulas — or openings — underneath my shaft. So whenever I urinated, urine sprayed everywhere like a garden hose. The doctors recommended that my parents give me antiseptic baths to aid healing and over the following two weeks all of the fistulas healed, except one.

According to my medical records, I was left with a small penoscrotal fistula and incomplete healing of the glanular portion of the urethra. It was at that time that the pediatric urologist surgeon again recommended we wait to schedule more surgery; it would repair the fistula, address the cosmetics of the penis, and secure my testicles down into the scrotum. He also knew I had been through a lot of surgery and recognized that I was beginning to exhibit anxiety.

To address the anxiety, our pediatrician at the time recommended that my parents purchase the book Curious George Goes To the Hospital by Margret and H.A. Rey.

As a child, and still as an adult, I’ve cherished that book and just about anything Curious George related. I really identified with the story. I even remember putting Band-Aids on my Curious George stuffed animal as a child. The book and the stuffed animal were like old friends, and many times over my life I’ve found myself reading through my old copy.

Once I was healed from that surgery — and despite the fistula — I resumed being a kid, even playing in children's soccer leagues and later in Little League baseball. In fact, one of the pediatric nurses, Nurse Donna, came to visit me during one of my soccer games.

As I began to grow, I thought a lot about my penis and why it looked the way it did. I often wondered: Why was there this hole that caused dripping and this indented scar on my stomach? It was hard not to focus on it. It was equally hard to ignore that I needed more surgery and had to do adult things like go to follow-up doctor appointments. It caused a lot of anxiety for me.

Even trips to the pediatrician for unrelated issues consumed me with fear as I assumed I would be examined “down there” and told I had to have surgery immediately. So while I did my best to be Mr. Sunshine, my general anxiety toward new places and people began to show. For instance, on my first day of kindergarten, I refused to leave the classroom bathroom because I was so scared of being in a new place. I even flipped the construction-paper streetlight that hung on the outside of the bathroom door from green to red to tell everyone to stop trying to make me open the door! Or on my first day of swimming lessons when I ran out of the indoor pool and into the men's locker room so that the female swimming instructor couldn’t come in to get me.

My sense now is that my early exposure to surgeries, hospitals and doctors created a threatened, vulnerable feeling within me. And later it caused difficulty with friends, jobs, and worst of all, my relationship with myself. Perhaps it exhibited itself in shyness or anger on a day when I wasn’t feeling my best and was frustrated or scared.

I can say that those experiences led me to become very familiar with feeling tough emotions. Put another way, I know the feeling of being a young child and having to be examined on my privates by serious people, like doctors; and worrying about what they would say. Or worrying about what would happen each time I needed to urinate, or how I could avoid that next operation.

Of course as I grew older, I began to notice girls. The teenage angst that accompanies this otherwise typical experience felt magnified because of my condition and the fact that I really couldn’t talk to anyone about it. What should I say? Should I say anything? And if so, when? What if she rejects me? On and on these thoughts went. Quite often growing up I experienced a burning sensation in my urethra, itching and pinching sensations and frequent urinary tract infections (UTIs).

This didn’t help my self-esteem and I was on antibiotics a lot as a result.

At one point, at age 15, I was trying out for a sports team at my new high school. The school doctor examined me and said that I might be sterile because of my testicles. This was extremely upsetting to hear and forced me to make an appointment at the surgeon's office. This was the culmination of my worst fear, which was having a doctor notice something's wrong with my penis and being sent to the surgeon. In my mind, if I went to the surgeon's office, even if it was just to talk about fertility, it could only mean one thing: More surgery.

It was during this visit with my pediatric urologist that I mentioned my fear of rejection from girls, as I was becoming more sexually active. His response is something I’ve always remembered. He said: “If a woman is going to reject you because of your penis, then she's not the right woman for you.” It was a really frustrating thing to hear. At 15, all I really wanted to hear was “no one will reject you.” But that's not what he said. I suppose, none of us can ever get that guarantee, and it was a hard lesson in acceptance. It was during my 20s when a girl I was dating told me she wouldn’t stay with me unless I got my penis fixed that I remembered the doctor's words and broke off the relationship. He was right. Ironically, it was around this time that I finally had the fistula surgery I’d avoided for so long.

However, the decision to do so was not my own. One morning, during the Spring semester of my senior year in college, I woke up and couldn’t void. It had come on suddenly and was a terrifying feeling. I remember I had felt a little odd down there for a few days before, but chalked it up to riding my bike too much. So, after a few calls to professors to tell them I couldn’t come to class, I found myself at a hospital on Long Island, getting a catheter and a scheduled surgery date.

While some people would feel relieved to have an issue corrected, I was experiencing very difficult and conflicting emotions. Of course I wanted to be able to void. However, having lived with hypospadias for so long, I had grown accustomed to the fistula; even having gotten into the habit of placing my finger over the fistula hole when I urinated to keep urine from dripping out. I’d grown accustomed to my testicles and how they sat above my penis on my pelvic bone, closer to my stomach than my scrotum most of the time.

So in a weird, emotional way, I began to mourn my penis. After all, when I woke up from this surgery I would have a different, unfamiliar one. It also dawned on me that I would be able to pee at a urinal for the first time and not worry if I would be covered in urine. I had lived like that for so long, I became attached to that worry. This surgery; this new body, this new me, would all require a huge emotional and physical adjustment.

On the day of the surgery I was petrified and anxious. I fought and cried, full of anxiety, anger and despair, feeling forced into something against my will. I eventually calmed myself enough to go, holding onto the assurance that expert doctors were performing the operation. The surgery was done, and when I woke up the doctors explained that I had developed strictures, or scarring, inside my urethra, from the previous surgeries. Hair from the hair-bearing skin of the foreskin had grown inside the urethra as well, causing a “bearded urethra,” and I had a urethral diverticulum, or a pouching, that had developed along the urethra. They removed as much hair as possible and fixed the strictures as well as the fistula. But they didn’t do any cosmetic surgery or stitch the testicles down because the area had too much surgical trauma over the years.

The technical term used in my medical records was “hypospadias cripple,” which means a patient has remaining functional complications after previous hypospadias repair. As you might imagine, this was devastating to hear. I had gone from avoiding surgery, to having to have the surgery, to accepting that the most private part of my body would be considerably different after the surgery, to finding out cosmetically it was staying the same, and then realizing that my condition could never be fully corrected. It was a lot to take in. When I was released from the hospital, I had a catheter and recovered at home with the help of family. It wasn’t easy. I was taking the medication Ditropan for the bladder spasms I was experiencing from the catheter (one of the doctors I interviewed for this book describes bladder spasms as “Charlie Horses” of the bladder). Also, the hypospadias repair surgery had taken place a couple of weeks before college graduation.

Since I had missed finals and a paper or two because of my situation, I was allowed to walk through the ceremony but could not receive my diploma until the work was completed. I was pale as a ghost that day. During my graduation party a week later, I was still wearing a catheter and it actually started to come out. So the last half of my college graduation party was spent back at the hospital having a new catheter put in. Overall, recovery from the surgery took about six weeks and by early summer I was healed.

Or so I thought.

In early August I began having difficulty urinating again. Another surgery was scheduled, called a urethoroscopy, where the doctors removed any remaining hair and widened the urethra to make it easier to void. This was an outpatient surgery and I returned home to recuperate.

The results were mixed though. Physically, I could void but I continued to experience burning and pinching, and noticed that I lost sexual sensation on parts of my penis.

Emotionally, another issue occurred to me. At 23, I was now too old for my pediatric urologists to treat me anymore. I needed to find a new urologist. And I needed someone who understood the extent of the surgical work that I’d had done. This caused me immense anxiety. It dawned on me that if I ever needed surgery for another body part, say a knee, for example, and needed to have a catheter, then that medical team needed to know the severity of my condition. Only an experienced urologist would be allowed to place it, for risk of undoing any of the previous surgical work.

For years I wasn’t able to find a urologist I trusted and fortunately I didn’t have any other urological issues during that time. It was also during this time that I began to research support groups and — thanks to the Internet — I found other men at the Hypospadias & Epispadias Association (HEA) who shared similar experiences. That was a huge relief, and it put my experiences in...