Living With Hypospadias

By John Filippelli

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 profess

• Language: English
• Publisher: Palmetto Publishing
• Release date: Jul 8, 2021
• ISBN: 9781638372189

John Filippelli

John Filippelli is a professional writer and a former president of the Hypospadias and Epispadias Association.

Book preview

INTRODUCTION

Years ago, my wife and I were renting an apartment in the home of our friends Karen and Kevin. Karen and Kevin had tried for years to have a baby with little success. Eventually they did, but sadly a few years later Kevin passed away. One day, Karen and I were speaking about Kevin and health issues in general. She mentioned that the reason they had trouble conceiving was that Kevin had some urological issues and I vaguely mentioned in response that I too had a urological condition that I was born with.

It's not hypospadias, is it? she asked.

Yes, it is hypospadias!

We were shocked and amazed that both of our lives were affected by hypospadias. There we were all living under the same roof and Kevin and I shared this condition and never knew it. Karen explained about Kevin's history of undergoing hypospadias repair surgeries when he was a boy and the physical and emotional scars he carried as an adult as a result.

(To be clear, Kevin passed away from a condition unrelated to hypospadias).

Karen believed these experiences created great anxiety within him. He developed an aversion to doctors throughout his life and consequently didn’t take better care of himself when he was older.

In my view, there's no reason why a situation like that should ever occur, that the secrecy and shame that Kevin and I both shared about living with this birth defect is the very reason we couldn’t discuss it — and what caused him so much angst. I wish I could’ve discussed it with Kevin, shared our experiences about our surgeries and what it's like to live with a condition that most people don’t know you have yet can dominate many aspects of your life, not least of which is your self-esteem and confidence.

So yes, this book is about the emotional impact related to a specific congenital birth defect called hypospadias — the second-leading [urological] congenital birth defect in boys (van der Horst and de Wall, 2017), in fact — yet it can appeal to anyone who lives with any physical birth defect, or anyone who has been labeled with mental illness for having very understandable coping difficulties.

There are a lot of us out there, many of whom have lived with, or are currently living with a deep sense of shame, isolation and other distressing feelings as a result of this condition. My goal is to provide a sense of compassion and unity through the stories and insights shared by those brave enough to be part of this book, including the wonderful doctors and other medical professionals who participated and shared their expertise. I am forever grateful to all who took part in Living With Hypospadias, and for enriching my life through the process.

I’ve spoken to many men, parents and spouses from the U.S. and around the world — including Canada, Europe, Australia and the Middle East — to highlight how common hypospadias is and how similar its effects are on people. We comprehensively discussed all of the emotional issues related to living with hypospadias; from how it felt to learn about your condition (or your child's); what the surgical experience was like; how to make the decision of whether or not to have future hypospadias repair surgery; what to expect if you do elect for surgery; how to navigate the stages of development with this condition; how to discuss the topic with your child; how to discuss the topic with your partner; how to find the right urologist, and how to get the most out of your consultation with the doctor.

This book also features expert insights from leading doctors in the field who explain what hypospadias is, how it is treated, and the physical and emotional issues that it presents.

Living With Hypospadias is the first book to so intimately (with first-hand accounts) address the emotional effects of hypospadias in order to bring comfort to those affected, provide support and resources for families, and raise awareness for those who treat it in order to gain a better understanding of these men. It will put a face to this condition.

Why is this so important?

Speaking as someone born with hypospadias who dealt with these issues it isn’t much of a leap to think that if there is something physically wrong with your penis then there is something shamefully wrong with you as a person.

And it's not rare. Millions of men around the world are affected by it. In fact, hypospadias affects 1 out of 200 male births (Source: Centers for Disease Control & Prevention) in the United States — and the frequency is increasing. Comparing it to other birth defects that are perhaps more familiar to people, hypospadias has a higher birth rate than down syndrome, cleft palate and clubfoot, for example. And these numbers are also likely lower than reality because many men with hypospadias are often not told about their condition by their parents or doctors, and as we will learn, pediatricians and obstetricians for example, are just now becoming more aware of the condition and what to look for in diagnosing it. Today there are men who have had surgery as an infant, know their penis looks different, do not know why and were never told they have it. Or they are acutely aware of their hypospadias and surgeries (like I was) and live in silence for decades (as I did) until a completely random situation (like I experienced with Karen and Kevin) occurs.

So the question is: Why is one of the world's most common birth defects affecting males rarely spoken about?

Simply put, it's a result of the stigma related to urological conditions. Many boys grow up assuming they are alone when in reality there are many others just like them. Of course, today there are more outlets on social media for parents to ask questions of their peers than there were for my family when I grew up in the 1980s. Yet from the many parents I interviewed, it's still challenging to overcome the issues they have to deal with resulting from this birth defect; particularly one that can affect their child's future sex life, possibly require multiple surgeries and — quite frankly — lead to a fear of bullying or rejection from future partners.

As a former president of the Hypospadias & Epispadias Association (HEA), I’ve had these discussions with other men and parents. As a man born with severe penoscrotal hypospadias, I’ve lived these issues; from having multiple surgeries as a child and navigating adolescence, through high school and college, dating, having more surgeries as an adult and eventually marrying my wife.

Living With Hypospadias will demystify the experience for those of us who live with the condition and shine a light for others to see what those of us with hypospadias feel and how it affects us. It will help remove the stigma for men, parents and spouses who are directly or indirectly affected by this condition and show that we are all more alike than we may have ever considered.

I will also interject my own experiences throughout the book, share challenges that I’ve experienced, how I’ve overcome them, and provide resources for additional support.

Ultimately, Living With Hypospadias will show that even though hypospadias is a lifelong condition, the emotional turmoil it can create does not have to be.

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,