Category Archives: Hypospadias

Hypospadias Treatment Decisions Paper

DISCLAIMER: The following material is provided for educational research purposes and is not intended to replace medical advice. The contents and sentiments within this post and the attached “Hypospadias Treatment Decisions” paper by Bonnie Steinberg do not necessarily reflect HEA’s position on this topic. Please consult a licensed urologist for medical advice.

Dear parents and friends of babies and young boys who were born with hypospadias or epispadias,

If you are a new parent, or an experienced parent, you may be exhausted from juggling all the things that you need to do—adapt to a new baby or adapt to parenting a baby with a difference you may never have heard of before. You may be working and parenting and not sleeping through the night. You already have more than enough to do. In the middle of all this, you might be making the decisions about whether or not to agree for surgeries for your baby or young child.

I wrote this paper as a master’s thesis in bioethics. And I wrote it because I believe that in order to be more fully informed you would do well to have the information that it contains as you make these important medical decisions. This paper contains my research and does not reflect the views of the Hypospadias and Epispadias Association (HEA). It is for educational purposes.

You already have more than enough to do and think about. The decision about surgeries is a very important one. It would be good to take time, adapt to your new baby, and perhaps begin to take in some of the information that I present. The paper is long and full of new information and sometimes hard to read. I know. But until I rework it, here it is.

The central focus is on the medical information that you might need. Are the surgeries elective or are they medically necessary? Do the surgeries solve the problems that concern parents? What are the surgeons saying to each other? Because my focus is on the medical information that you might want before you make a decision, there are some issues that are of great concern to parents that don’t really get addressed. Most important might be the questions of your son’s psychosocial needs and well-being. How do parents deal with the larger issues of raising a boy with a genital difference—so that your son will be self-confident and feel well loved and respected and able to handle many of the situations that arise in growing up?

If you have any questions or want to contact me, please don’t hesitate to email me at bonniesteinberg2@gmail.com.

—Bonnie Steinberg

Adult Surgical Re-Repair for Hypospadias

So, something is not feeling quite right down there. . . . Maybe you are noticing your stream decreasing when you void, or pain in your testicle or your side or lower back. It might hurt a bit when you void or you find you have to strain to empty your bladder. Maybe you are feeling lumps or hard spot in your penis, discomfort during sexual activity, or maybe you are having a lot of urinary tract infections. What does it mean?

You try to ignore it, but it won’t go away. You may start having flashbacks to surgeries you had down there as a boy. You want to do anything to avoid having to admit that something might be wrong, something that might require surgery.

Unfortunately this is a very common situation. Most urologists don’t do any type of long term follow up studies on all the boys with hypospadias or epispadias that they successfully “fix.” If they did the actual “success rates” would likely be very low, because as we age there is a good chance we may need some type of re-repair.

The unfortunate reality is that there is no perfect solution when a doctor tries to rebuild, recreate or repair part of our body, especially if foreign tissue is introduced or tissue not made for that purpose is given a new form (i.e. re-building a urethra using foreskin or skin from the inner arm, thigh, or bladder). There is a good chance such repairs will have a shelf life and you will need to consider having a re-repair later in life.

From experience, we hear story after story of guys who were “fixed” as children and then, if they are lucky, they hit their mid 30’s or early 40’s and start to realize that something is going wrong. This can bring up all sorts of psychological issues and past trauma for the person.

The following is a list of some of the issues or complications that can happen:

  • Strictures (this seems to be the most frequently occurring issue by far)
  • Narrowing of the meatus (opening of the urethra)
  • Blockages such as those resulting from hair growing in the urethra
  • Stones in the urethra (possibly due to hair growth in the urethra)
  • Epididymitis (pain in that passage way from the testicle to the urethra)
  • Fistulas (an extra hole that fluids can pass through—like springing a leak)
  • Diverticulum (a widening of an area along the urethra that pouches out when filled with fluid)
  • Chronic urinary tract infections

The most common issue is urethral stricture disease. A stricture is a narrowing of the urethra that causes the stream pressure to reduce when voiding. It also causes pressure on the systems located behind the stricture. Things can back up and cause problems eventually for the prostate, the bladder, the kidneys and the testicles. Strictures can be the result of scar tissue building up inside a recreated urethra. It could be the result of the foreign tissue that was used to recreate or patch up the urethra breaking down, or problems with the area where the newer tissue meets the original tissue. Sometimes the tissue doesn’t have good blood flow, or it may not respond to sex hormones the same way the original tissue does.

The most common initial solution for strictures seems to be to dilate the urethra. This involves inserting a tool to stretch the strictured part of the urethra to make it wider. This can sometimes provide some temporary relief, but it is never really a solution to the problem. Dilating a strictured urethra just serves to retraumatize the already scarred tissue, and it is likely that this will eventually make the situation worse.

Usually, at some point you will have to face the possibility that you will indeed need some sort of re-repair. This can be a very hard reality to face. You may have gone years since ever being in the hospital because of your penis. People around you might not know about your issues with hypospadias or epispadias and will wonder what medical problems you are having, especially if you have to miss work for surgery.

  • How do you tell your loved ones, family members, or close friends about the situation?
  • What do you say to your employers and co-workers?
  • How do you find the right doctor?
  • What about health insurance?

Many of the traumatizing emotional feelings that may have been locked up for years can start to come flooding back to the surface as you realize you may need further surgery.

Even if you have a supportive spouse, partner, or close family members, it can be very difficult to really feel supported or feel that they understand the emotions attached to this situation. In reality they can’t truly understand, as much as they might want to. This is why it is so important to find supports that know what you are going through—supports that you can only really get from other guys with HS or ES. With the connections available through the internet and social networking systems you no longer need to feel alone or isolated when facing adult re-repairs for your HS or ES. Groups like HEA (the Hypospadias and Epispadias Association: www.heainfo.org) can provide an opportunity for you to learn through articles, online chats and message boards, in person connections through their network of members and annual conferences, and more.

This psychosocial support is probably one of the most important factors to consider when facing an adult re-repair. It is much easier to deal with when you know you have connections with people who really understand and have been there.

By Chris in BC