HEA will be having its third all-day online open house on December 4, 2011, from 11am to 11pm Eastern Standard Time. Go here for more details.
It's a great opportunity to get answers to your questions, touch base with other members of our community, and join HEA for only $25 (that day only!).
or don't have it installed, use the Site Map at the bottom of the page to find
your way around.
# of visitors since
Traditionally, when a therapist is attempting to treat a particular disorder or population, he can find an abundance of information about this condition and a plethora of theoretical formulations, treatment strategies and techniques that often have tried-and-true success. This, however, is not the case when an adult male with hypospadias presents himself in psychotherapy. A review of the literature provides an extensive medical prospective of what is, and what causes, the diagnosis, and treatment of hypospadias, but one needs to dig deep to find information regarding the psychological implications of hypospadias, its commonality, or adaptive and maladaptive coping strategies. There does exist some research of children and adolescent boys, which certainly has some predictive indicators, but strong differences are prominent for older adults due to cultural norms of sexual secrecy and past less successful surgical outcomes. The most exhaustive psychological bibliography can be found in the publication of Dominique Salm (Louvain-La-Neuve University, 2003), “The Psychological Implications of Hypospadias,” available online.
Over the last few years, my experience helping adult males with hypospadias find their voices has led to a few common issues. This paper is offered only as a guideline to the most common issues that I have seen presented for individual counseling, group, or workshop discussion. Despite variants in age, severity of condition, generalized knowledge, or medical treatment history, I have found a burning desire among the men to talk about:
2. Their medical history
3. Meeting others like themselves
4. Bathroom habits
5. Childhood experiences
6. Sexual and emotional relationships
7. Fascination and fear of other men’s penis size and functionality
The statement I hear repeated over and over, whether face to face, over the telephone, or over email is, “I have never talked about this with anyone other than a doctor (briefly) in my life.” It remains a mystery how a severe hypospadias adult can navigate childhood, family members and even establish long-term sexual relationships and avoid ever discussing his condition. With the advent of the Internet, adult men living with hypospadias began to find each other. Terrified of exposure in real life, the anonymity of the internet allowed men to discuss their condition and learn that they were not alone. Many were never provided the word “hypospadias” and never knew that they were not unique in their condition. This new knowledge often brings a huge sense of relief but usually also accompanies some overwhelming feelings of rage and grief at their years of shame and isolation. Often when discussing the specifics of their situation they lack the basic knowledge and language of hypospadias and have little or no knowledge of their medical history. This phase of self-discovery is marked by a thirst for definitions, a desire to learn about the past, and a strong relief from isolation and secrecy, but it is also accompanied by terror of exposure, self-hating and disparaging remarks, suicidal ideation, memory retrieval, and profound shame and regret. It is often a time of engaging in treatment, terminating it, and re-engaging as the fear becomes often overwhelming. This period must be carefully navigated slowly at the client’s pace in order to integrate this new knowledge and to consider who is included in his support network and how to find more information about his history. This learning as people meet others, who have full, happy, productive lives, gives the newcomer hope but is also marked by comparisons of severity, size, surgical success, and functionality.
After a foundation of trust has been established and the client feels stable and connected to a support network, he may feel the need to piece together his past. Many clients attempt to contact doctors and hospitals in order to retrieve records. Some will ask their current urologist to explain in detail their case, the meaning of each scar, and treatment options for cosmetic surgeries or re-repairs.
Families are often questioned about their memories of what happened and when. This is often a very difficult conversation for people who have spent a lifetime of never discussing hypospadias or of using coded language to obliquely reference, “your situation.” Older siblings and trusted family friends can also be found to be the holders of family secrets. During the 1950s and 1960s, it was common practice for the physician to instruct the family to never discuss this situation, and to go on as if nothing had ever happened. Today we know this to be a wrong practice. Many families do not want this door ever opened, but many also feel released from the secrecy and have wanted to disclose information for years. This gathering of the past can be very therapeutic in helping a client feel connected to his own body and released from the bondage of secrecy and self-blame.
All my life I felt like I was transplanted here from another galaxy. Finally I was meeting others from my world who understood me and finished my sentences.
Nothing has been more rewarding than watching the magic that occurs when a hypospadias adult male meets face-to-face with another. I have found the fear and resistance to meeting others to be one of the tallest hurdles to overcome, but I have never seen it not be a profoundly cathartic moment. Again, either face-to-face, or in a small group therapy or workshop modality, the tears flow freely when finally they meet others who have walked such similar paths. Despite differences in severity and age, each seems to intuitively find men with similar experiences, and the biggest wall of isolation, secrecy, and shame begins to crumble. Clients report that for the first time in their lives they felt free to talk openly and honestly without fearing rejection, ridicule, pity, or having to protect the listener from graphic detail. Although I think individual counseling is necessary to prepare the client, a group modality can provide so much more healing than even the non-judgmental understanding of the therapist. One potential pitfall, however, is that severe posttraumatic syndrome clients can be very quickly re-stimulated by this immersion.
The first question an adult hypospadias man asks on meeting another is almost always, “How do you pee?” As most disabilities have a pecking order, this concern ranks highest, I believe, because it predates sexual interest. This sharing of method of urination, coupled with the ingenious stories of how they managed to hide this from exposure, the covert ways they ferret out “safe” bathrooms and require more bathroom locks than Fort Knox, begins to reframe what was once so painfully traumatic to shared rolling-on-the-floor laughing. This mutual sharing of painful material sets a foundation of trust for the beginning of more sensitive and private experiences, past and present.
For the scope of this paper I will present only the most bare-bones generalities, for it is here that life experience begins to separate out the severe cases from the mild, the surgical success stories from surgical failures from the never-operated-on, the supportive and open families from the dysfunctional, the young from the old, the gay from the straight, the verbal from the shy, and the highly adaptable from the trauma or abuse clients.
The first level of sharing consists of “war stories” chronicling every remembered surgery and doctor consultation with evaluations ranging from “my doctor was the most renowned” to “mine was Dr. Horrible.” Clients begin to go back and forth between memories of people or places that were loving and supportive to memories of horror and trauma.
Following a medical history, everyone has a locker-room, gym-shower or dressing-room experience to share. Each client recounts times when he revealed himself and received comfort or was rejected, ridiculed, or abused.
The awakening of sexuality is difficult for everyone, but for men with hypospadias it is an area of secrecy and fear. Where once this area was only filled with physical pain and embarrassment, it now becomes an arena of pleasure and that is disconcerting. Clients begin to share stories about masturbation and masturbation techniques and their first adolescent experimentation. These stories run the gamut from highly successful to significantly traumatic.
It is here where the rose-colored glasses of hypospadias and shared identification begin to break down to a full range of unique life experiences. High-functioning clients often feel a separation from, or fear of, men with more disability, but this feeling is also often accompanied by a sense of gratitude for their own situation. It is here where I find most higher-functioning clients feel they have benefited from individual or group experience and feel the need to integrate back into the mainstream and drop out from treatment or group membership. Lesser-functioning clients, however, can benefit from the shared camaraderie, the gathering of success stories, and the hope of better outcomes. But many of the individuals who remain have had one or no surgeries.
At this stage the therapist should exercise caution, and investigate to see whether higher functioning clients are terminating because of internalized self-hate and fear of association with more disabled group members. It is also common to see a return of shame and self-hate in lower-functioning clients after they have found a safe community but continue to feel so much less than adequate.
It is of course here that the core of secrecy and shame resides. Everyone wants to experience love and sexual gratification. All men worry about whether they measure up sexually and whether they will ever find a compatible love partner, but men with hypospadias have a warehouse full of fear of rejection and a sense of inadequacy concerning penis size, fertility and genetics. They long to find the “right” words to explain their situation to a potential love interest. Many do have stories of rejection, but the healing comes from the majority, who, despite all odds, have forged happy sexual and love lives. Fears of inability to father a child are often met with stories of successful conception (in the usual manner) from clients who were told that the odds were slim to none. Information about size, insertion, capability and erectile function are often openly shared. How and when to reveal to a potential partner is often the most critical concern. Men have felt unable to discuss this topic, more than any other, with a doctor, family member or close friend. Finally, men with hypospadias are able to give voice to their deepest, darkest fears and secrets.
Many to most adults with hypospadias have reported a fascination with other men’s penises and penis size. Often this preoccupation has led to homosexual experimentation. There is no evidence that hypospadias increases the chances of bisexuality or homosexuality, but most men I have seen have had some experimentation. Also, the simple preoccupation with viewing other men has gone directly against cultural norms and has given rise to even more fears and feelings of inadequacy. Heterosexuals often feel it is easier for homosexuals to find partners; homosexuals retort that woman are more accepting of size and performance. Here, hypospadias often is the equalizer where I find men more open to listening and learning from a wide variety of sexual expression. Group modality has great value here; however, I find individual counseling somewhat more effective.
The tragedy of hypospadias is not in the condition or in its medical treatment; rather, the tragedy lies in the isolation and secrecy that accompanies hypospadias. I have never met a single man with mild to severe hypospadias, surgically well-repaired or not, who did not feel mildly to profoundly different and alone. Each client has had to scout his own way and never to have the comforting words: “This will get easier, for I know, I have been there.” As professionals, our first contact with a client is almost always through obstetrics and pediatrics. Clients are then often referred on to pediatric urologists. The medical profession has been tireless in the treatment of this condition, but no matter how successful the surgery may be, with the exception of mild hypospadias, this child has too often been denied access to a valuable resource of families who have come before. We already know that even in open, communicative homes puberty is marked by teenage privacy and secrets. Just as his body is changing arrives the time when the boy is separating from his parents and sharing less information. Childhood secrets often become adult pathology. We must provide access to the psychological well-being of this all-too-silent birth defect.
Many psychotherapists and mental health professionals have never heard of hypospadias, and finding a knowledgeable therapist is almost impossible. A firm working knowledge of hypospadias, medical PTSD, comfort and experience with gender, sexuality, and disabilities is crucial. I have had great difficulty finding referrals, frequently hearing from what I considered competent, caring professionals that they “didn’t feel comfortable with this issue.”
An area that needs more research is the abuse of alcohol and recreational drugs that I am frequently seeing in adult males to medicate the stress and to allow the sexual inhibitions to be lowered. Several of my clients have reported their first successful sexual experience was under the influence of excessive alcohol, drugs, or both.
When hypospadias is no longer considered hidden or not to be discussed, we will then and only then be left to work through the issues of a physical disability and finding better coping strategies to successful living.
General Home | Join HEA | Message Board | Message Board Rules | How Do I Get On? | Chat | Chat Schedule | Trouble Connecting | Newsletter | Support HEA | Become a Member | Make a Donation | Volunteer | Use Goodshop/Goodsearch | Use Amazon.com | Use Orbitz & Hotwire | Use eBay Giving | HEA Conference | 2009 Registration | 2009 Hotels | 2009 Air Fares | 2009 Conference Schedule | 2008 Conference | Norfolk Conference Photos | Search HEAinfo.org | Privacy Statement Keep in Touch Contact Us | Feedback | Mailing List | Calendar of Events Learn about HS/ES Personal Stories | People with HS/ES | Surgery Blogs | Adult 2-Stage Urethroplasty | Adult Circumcision and HS Fix Up | FAQs | For People with HS/ES | For Parents | Resources | Library | Articles | Glossary | Other Support Sources Our Organization Our Board & Staff | Board/Staff Bios | Our Mission | Our Bylaws | Our Org. Structure | Our Committees Our Publications Our Brochure | Our Public Svc. Announcement | Conference Papers | Psychological Treatment Issues | Role of Self-Help Groups | Our Survey | Messages to the Community Letter from Exec Dir | Billy on Fundraising
Hypospadias & Epispadias Association • 240 West 44th Street, Suite 2 • New York, NY 10036 • USA • Telephone 1-212-382-3471
Using these links to shop and search means that HEA gets financial support from these businesses.
Next time you go internet shopping, start here to help maintain HEA's financial security!