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Dissertation Approval Hypospadias S.K. May DISSERTATION APPROVAL This dissertation submitted by Sharon Kay May has been read and approved by three faculty members of the American Academy of Clinical Sexologists at Maimonides University. The final copies have been examined by the Dissertation Committee and the signatures which appear here verify the fact that any necessary changes have been incorporated and that the dissertation is now given the final approval with reference to content, form and mechanical accuracy. The dissertation is therefore accepted in partial fulfillment of the requirements for the degree of Doctor of Philosophy. Signature Date __________________________________ ______________________________ William Granzig, Ph.D. Advisor and Committee Chair __________________________________ ______________________________ John H. Arnold, Jr., Ph.D. Committee Member __________________________________ ______________________________ Stephen L. Sloan, Ph.D. Committee Member Hypospadias S.K. May ACKNOWLEDGEMENTS First and foremost, I must express gratitude for my faithful companion of twenty-eight years. My husband and lover has been my own personal computer-help desk, but because of this project, Ron has developed many other useful skills, such as shopping and cooking. My mother and my children - Danny, Shannon, Craig, Chad and April, all have offered frequent support and encouragement. Thanks! Appreciation also goes to Gretta, a colleague from sexology classes, to my dear friends: Nancy and Elizabeth, and to my boss, Dr. Lee Arnold, and his office manager, Brenda. You have all helped me to stay focused and accepted the limitations I had to measure out. "Thank you" as well, Dr. John Arnold and Dr. Stephen Sloan for serving on my dissertation committee. Of course, I owe a great deal to my "tutelary saint," Dr. William Granzig. As soon as I came to you with my plan to back up a research topic with my nursing experience, you immediately directed me to a topic that I discovered to be "virgin ground," and where Sex Therapists are greatly needed and welcomed. Moreover, in order to serve those special needs, knowledge and understanding are essential. Because I did wisely choose to pursue the topic of "hypospadias," I have become acquainted with some very incredible people. The individuals that granted interviews opened their hearts to me. They unselfishly shared their personal struggles, pain and hopes. Because of them, I have been inspired. My understanding of what it is like to face the challenges of hypospadias was enhanced far beyond what I could ever glean from reviewing other studies. To the men and their loved ones who have been affected by this "anatomical variation," I dedicate this paper. Sharon Kay May iii Hypospadias S.K. May Title Page………………………………………………………………………… Dissertation Approval……………………………………………………….…… ii Acknowledgments……………………………………………………………….. iii Vita………………………………………………………………………….…… iv Table of Contents………………………………………………………………... 1 Abstract………………………………………………………………………….. 3 Chapter 1: Introduction to Hypospadias…………………………………………. 5 Chapter 2: Methodology…………………………………………………………. 10 Chapter 3: The All Male Review: the developing male anatomy and physiology 18 Chapter 4: Review of the Literature on Hypospadias……………………………. The Physical Challenges…………………………………………………… 30 Chapter 5: Continue Review of the Literature on Hypospadias…………………. Psychological Challenges:…………………………………………………. 57 Chapter 6: The Good, the bad, and the ugly: Experiences of Living with ……… Hypospadias: Thirteen Personal Stories……………………………………. 74 A: Urinalphobia………………………………………………………… 74 B: "He's having surgery on his arm!"………………………………… 79 C: "How I became a motorhead."…………………………………….. 83 D: Hypospadias Fashion Show: catheter and leg-bag……………… 89 E: "What hypospadias?"……………………………………………… 92 F&I: Honeymooning with Hypo……………………………………… 94 G: Post Traumatic Locker-Room Syndrome………………………… 99 H: A Legal Sex-Change Story..………………………………………… 105 Hypospadias S.K. May K: "Maybe he should be a Priest?"…………………………………… 107 N: My Life With Hypospadias…………………………………………. 114 L: Four adults Vs one toddler for a bandage change……………… 117 O: "I can't tell where he's peeing from!"…………………………… 124 R: "More surgery? What's the point?"……………………………… 127 Conclusion…………………………………………………………… 130 References……………………………………………………………………….. 134 Appendix………………………………………………………………………… Appendix 1: Glossary of terms…………………………………………………... 141 Appendix 2: Questionaire …………………………………………………….… 146 ABSTRACT Hypospadias S.K. May It is well understood that an individual's ability to form intimate relationships depends in part, on having a solid, foundational sense of self, based on realistic self- knowledge and a reasonable degree of self-acceptance. It is indeed essential that therapists working in the field of Sexology understand the contributing factors that may challenge such a development of self-acceptance. No where is this more evident, than when an individual starts life with a physical challenge. Hypospadias is the medical term for a male birth defect that affects the body-self image concept in a major way, determined by the very "part" that affects a male's self- concept- "his penis." It is a condition in which the urethral tube, a passageway for both urine and semen to exit the body, does not form as usual. While the baby was still growing before birth, the urethral opening prematurely terminated on the underside of the penis, rather than ending at the tip. This malplacement of the urethral opening, before it reaches the glans, on the shaft, or even as far back as the scrotum, usually affects the boy's ability to stand and urinate like other boys and men. For him, having to sit and urinate like a female, places him at a painful social disadvantage. And too, associated conditions may prevent him from having a straight penis, necessary for satisfactory sexual function. Corrective surgery often brings additional challenges- complications and more surgery. It is one of the most common birth defects in boys, with approximately 8 out of 1,000 male newborns being born with hypospadias. Furthermore, reports abound that indicate an increase in Hypospadias in the U.S. and in other countries around the world. The Internet has provided an expedient vehicle enabling Hypospadiacs to come out of "hiding the secret in their pants" to form an international fellowship with local support Hypospadias S.K. May groups. Parents of children with hypospadias are eager to learn from and share with these groups. No longer to parents resort to following the limited advise of a single doctor, but equipped with medical information, they "shop" for surgeons and may travel a considerable distance to obtain the most favorable surgical results. And what is more, the corrective surgery and care of those with hypospadias has evolved into a true subspecialty- hypospadiology. Hypospadias is a fairly common phenomenon. A great deal of research already exists in the medical community. Time after time, these researchers suggested psychosexual counseling to assist hypospadiacs through their many challenges to self- acceptance. This in itself, is a call for Sex Therapists to become acquainted with this condition and become prepared to meet the specific needs of a group that is growing less shy and less hesitant to ask for help. Therefore, the purpose of this study is to examine the physiological and psychosexual challenges of males born with hypospadias, as well as their loved ones. To accomplish this, a review of the literature is done in order to gather a base of knowledge, including vocabulary, etiology, and appreciation of surgical procedures and possible complications. A review of normal male physical development is presented in order to draw a parallel of comparison. Moreover, facts alone would not be sufficient for a realistic understanding of the challenges of hypospadias. In order to augment the literature and reinforce empathic enlightenment, individuals who have been affected by this anatomical variation, have contributed their personal accounts, guided by a semi-structured questionnaire. Hypospadias S.K. May CHAPTER 1: INTRODUCTORY OVERVIEW OF HYPOSPADIAS The penis is mightier than the sword. Mark Twain INTRODUCTORY OVERVIEW TO HYPOSPADIAS Hypospadias S.K. May Hypospadias, a developmental anomaly, presents with a urethra that does not open in a regular position on the genitals. Rarely does this condition occur in females, with the urethra opening into the vagina, but the urethral malposition on the underside of the penis or on the perineum, is one of the most common birth defects in baby boys (Novak, 1995, p.356.) Hypospadias is usually diagnosed in the newborn nursery. Any natural passageway from the body is called a meatus. In a newborn, those natural passageways are evaluated for patency (openness) and function. Thus, the use of a rectal thermometer would serve a double purpose and the witnessing of the baby boy urinating is recorded (but from the exact "hole" is sometimes not observed). A newborn assessment form should include indications for meatal location on a diagram. This monograph on hypospadias is specifically concerned with the external outlet of the urinary meatus, but to simplify, the terms of urethra and meatus are used interchangeably. In cases of hypospadias, rather than the normal position on the tip and in the very center of the glans penis, the meatus is positioned elsewhere on the ventral aspect of the penis, including the glans or corona, penile shaft, penoscrotal junction or perineum. Experts say that hypospadic variations
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