The Role of Self-Help Groups in the Treatment and Education of Hypospadias and Epispadias

G. William Deegan, LMSW, CASAC

The one thing we can be sure of is that life will throw us an unexpected event that will propel us in a direction we never imagined we would be heading. Since the beginning of human communal life, groups have been formed to help support goals ranging form self-improvement to community survival. In western civilization, self-help groups were first recognized with the formulation in 1935 of Alcoholics Anonymous. This group organized people who themselves suffering from the disease of alcoholism, but whom the medical community deemed “untreatable”. By sharing their common knowledge and experience, with access to support twenty-four hours a day, alcoholics stopped drinking by the hundreds of thousands. Today, thousands of medical self- help and support groups exist and are particularly helpful for those whose reasons for seeking help are accompanied by shame and secrecy. When a medical condition also affects the reproductive or genital organs, or is in someway sexually associated, the added burden of shame and isolation is always present.

Despite the high and increasing incidence of hypospadias, little research has been done on the psychological effects of this condition. Until 2001, no organization existed to provide education and support to families with a recently diagnosed child, an adult who has lived with hypospadias, or the professional psychological community when a hypospadias client presents himself. Each diagnosis had to rely only on the support and knowledge base of the medical practitioner who treated him. There did not exist a flyer or take-home pamphlet, nor did the library provide any literature to help answer questions clients didn’t even know how to formulate. This situation, coupled with a condition that affects such an already taboo discussion area, left families silenced, alone, and afraid. Another significant factor was the severity of the condition. The psychological implications of hypospadias and epispadias range considerably when assessing severity, functionality, cosmetics, complicating factors and surgical success.

The internet was the place where finally people affected by hypospadias finally found each other. The Hypospadias Epispadias Association originally began as a message board where members began to ask questions and share experiences. As the curiosity of thoselearning more about their condition finally outweighed their fear of exposure, HEA held its first Conference in Denver, Colorado in 2001. We have now formally organized into a not-for-profit, tax-exempt association, but our mission remains the same:

• We create and nourish a community that erodes the isolation and shame brought about by hypospadias and epispadias.
• We act as a center of information and experience for parents and adult men who are considering the available treatment options.
• We provide a forum for an open exchange of information between the hypospadic/epispadiac community and our health care providers.
• We educate the public at large about the prevalence of these conditions and remove their stigma.

We accomplish this through our website, www.HEAinfo.org, which provides a discussion board, chat rooms (for live conversation), online educational forums, articles, brochures, DVDs,  radio public service announcements, news, conferences (both HEA’s and related conferences), fundraising events, educational photographs, and personal biographical stories.  The contact available, both in-person and anonymously, allows people to approach HEA at their own comfort level. Three very different populations seek our help.

Parents/Family

Initial Diagnosis

One large group of people soliciting information and support are the parents of boys recently diagnosed. They have just heard the word hypospadias and often feel that there is no one they can turn to for information or support. Their primary concern are where to get accurate information, whether they caused this condition to happen to their sons, where they can find doctor recommendations, and how they should make decisions concerning surgery.

Approaching Surgery

This group has usually done considerable reading and knows the condition and treatment options but is now struggling with conflicting information, impending surgery, deciding on age for surgery, support for non-surgery option, and toilet training. In particular, members of this group are very concerned about psycho-sexual prognosis for their son’s future.

Immediately Post-Surgery

These parents are concerned mostly with nursing care, pain management, and signs of complications. Although we encourage parents to stay in touch with the hypospadias community, if the surgery was successful, we often never hear from them again. For the most part parents want surgery to take this issue away. For some, this corrective surgery is one marker of recovery, but to others this moment represents when the family hopes to stop talking or thinking about hypospadias.

Post-Surgery Complications

Complications and unsuccessful surgeries are the most painful requests we receive. This group is consumed with fear, guilt, anger, and an abundance of questions for other parents who have experienced similar events. This group is asking for doctor referrals and is second- and third-guessing every decision.

Adult Hypospadias

Almost without exception, members ofthis group, whether they are 18 or 80 years old, contact us saying, “I have never talked to or met anyone like myself.” They have an insatiable appetite to share their story and to compare positive and negative experiences living with hypospadias. Many have had several surgeries as children and many corrections and complications as adults. Some have never had surgery and wish they had been corrected. All have said that hypospadias has seriously impacted their life. Their major concerns are:

• Cosmetics
• Size and functionality
• Adult surgeries
• Finding out what happened to them in the past
• Sexual orientation confusion
• Fear of sexual intimacy
• Self-disclosure to friends and partners
• Method of urination
• Genetic factors
• Chemical abuse

Professional Community

HEA has worked to foster strong relationships with the Society of Pediatric Urology (SPU), International Society on Hypospadias and Intersex Disorders (ISHID), Pediatric Nurses, Social Workers and other health care professionals. Many of our members are also health professionals and have made strong networks within their own disciplines.

While not without its problems of misinformation or providing instruction beyond the level of competence, self-help can provide members with that priceless security of experience and wisdom, and the end of isolation and secrecy.