Hi all -
I'm really down and need some advice.  To give you a quick background, my #1 goal in surgery was the ability of standing to void.  I had other desires as well, which all factored into my decision to go the metoidioplasty/urethral extension route with Dr. Miro in April 2016.  I know complications aren't uncommon, but I have been disheartened to have a fistula which never completely closed.  The fistula is extremely small; in fact, so small that I can stand to pee if I use my finger to create pressure against the hole.  However, I still have problems with residual dripping once I release the pressure. 

I have consulted Dr. Zhao and Dr. Bluebond-Langner at NYU with the hopes of having the fistula fixed so I can have my right testicle restored (lost due to infection) and get on with my life.  After going through 2 cystoscopies to locate the fistula, his reparation plan is to use a graft from my thigh to rebuild the urethra.  He said that even going this route I only had a 3 in 5 chance of the initial fix being successful. 

I figured a hole this small would be a fairly easy fix, so I'm extremely depressed to receive this news.  Others' accounts I have read regarding fistulas are that they had a repair completed after the initial surgery which closed the fistula.  Hence, I never considered it a possibility that I may never be completely restored.  At this point, I have two decisions: 1.  Live the rest of my life plugging a hole and dealing with post-drippage or 2.  Attempt a repair with the surgeon knowing it's a gamble I could end up worse off and lose my ability to STP.

While I desperately want to STP without dealing with drippage, I'm afraid of going through more surgery and ending up worse off than I am now.  I have plans to have my testicle re-inserted and the mons completed, but I think I need to deal with the fistula first.  Any thoughts or words of advice you could offer me?

Thanks in advance,
Patrick

Thank you for posting. I'm really sorry you got such distressing news. I can understand some of what you are going through. I had a urinary fistula from hysterectomy and it was one of the toughest things I have ever gone through.

It sounds like the fistula is presenting in such a way that Dr. Zhao feels it can't be excised and closed; instead, the urethra has to be rebuilt. Were any further details offered? Such as evidence of scar tissue or shrinkage of the urethra? (Which could develop into a stricture with further suturing in the area.) Was there any indication that this would be the only chance for repair? (Sometimes the first repair doesn't work but the second does.)

You're in good hands with Dr. Zhao, but the decision of how to proceed must be agonizing. If you go forward with repair and it doesn't turn out, it would be tough looking back and wondering at what could have been. But if it works, there will be no looking back and no regrets. I guess it's a matter of trying to figure out what you can and can't accept about the situation.

I wish I had some for you, but no easy answers here.

For what it's worth, when I do a mental round up in my head of stories I have heard about frustrating fistulas and repairs, it seems to me that the majority of those situations worked out. This is far from being reliable data of course, but is offered as encouragement!

Regards,
Joshua

Sorry to hear what you have gone through regarding your fistula. I can't imagine going through this after a hysterectomy, as it was probably less expected to have that complication without the urethral extension. I hope everything has worked itself out.

Thanks so much for your words of encouragement, as it helped give me some hope. A few months ago, Dr. Zhao tried closing it with a stitch but that didn't work. He said that he would need to rebuild as he feels that is the best chance I have since the first attempt didn't fix the problem. He didn't indicate that this is the only chance for repair, but I just can't imagine going through this multiple times. It already sounds like it will be close to going through what I went through for the initial surgery all over again.

I may take a step back and try to get a second (or third) opinion. Dr. Miro in Belgrade Serbia did the initial surgery, so going back to him is an option, but I was just trying to avoid having to go through the expense and logistics of flying back to Serbia.

Thanks again for taking the time to respond.

All the best,
Patrick

Thank you for posting. I'm really sorry you got such distressing news. I can understand some of what you are going through. I had a urinary fistula from hysterectomy and it was one of the toughest things I have ever gone through.

It sounds like the fistula is presenting in such a way that Dr. Zhao feels it can't be excised and closed; instead, the urethra has to be rebuilt. Were any further details offered? Such as evidence of scar tissue or shrinkage of the urethra? (Which could develop into a stricture with further suturing in the area.) Was there any indication that this would be the only chance for repair? (Sometimes the first repair doesn't work but the second does.)

You're in good hands with Dr. Zhao, but the decision of how to proceed must be agonizing. If you go forward with repair and it doesn't turn out, it would be tough looking back and wondering at what could have been. But if it works, there will be no looking back and no regrets. I guess it's a matter of trying to figure out what you can and can't accept about the situation.

I wish I had some for you, but no easy answers here.

For what it's worth, when I do a mental round up in my head of stories I have heard about frustrating fistulas and repairs, it seems to me that the majority of those situations worked out. This is far from being reliable data of course, but is offered as encouragement!

Regards,
Joshua

Hey Patrick, how are you doing these days?