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 re-created 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 sometime provide some temporary relief, but it is never really a solution to the problem. Dilating a strictured urethra just serves to re-traumatize the already scared 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