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I've had FOUR urinary sphincterotomies in the last year, and probably have a 5th one coming up in another 4 months!!! If you've got any questions on what it's like going through the surgery please just ask- I'm an expert on them now. I'll describe what I've been through below (and sorry it's long- I've been through a lot), but note I believe the bleeding and pain that comes with a sphincterotomy is still worth it overall. If your urologist is considering you need one done, they your probably really do, so please don't let this scare you- only help you to expect and prepare for what will happen.
For me, I've had urge incontinence with a neurogenic blockage since a bad car wreck back in 1996. Over the last two decades my blockage had slowly grown worse to where I would get an urge and need to go- except that I couldn't. And for every second I couldn't go it would get more and more painful. You see, when ever my internal urinary sphincter would open, my external sphincter would automatically clamp shut. Eventually I was having to push and strain so hard to even produce a weak stream that the pressure it was causing was also causing a lot of other major life threatening problems for me. The the last 20 years I've lived with this, all of the urologists I've seen didn't know what to do to help me, and the 12+ urodynamic studies I've gone through all had to be stopped because I simply couldn't go no matter how I tried- except for my last one just over a year ago. You see, if it takes a lot of straining for me to open up a 0.1cm dilation for let a little pee through, adding in an 8mm thick catheter on top of that meant I would have to get an 8.01mm dilation- yeah right. Well, I finally just managed to push through the pain and managed to strain hard enough to go. Of course that put me quite literally off their charts for the amount of pressure it took for me to do it. Before this, not one of my previous urologists wanted to do a sphincterotomy on me. Though I have been through literally every medication, technique, and even that horrible interstim (I shudder on that). Needless to say, with that new data my current urologist fast tracked me to finally getting it done.
The first sphincterotomy was not as I expected. Most any -otomy surgery will completely remove the organ in question. This is not true with any modern sphincterotomy though. My first (and third) surgery used what is known as a radial cut method. It is the most effective, but supposedly also comes with increased risks (which I have never noticed). The idea behind this method is to make it so your muscle can't fully close back down again, which will allow your urine to freely pass through the muscle opening even if it tries to close shut. It was done by cutting through my urethra and removed a layer of my external sphincter's muscle all the way around. This cut was not done very deep though as the deeper they cut the more you will bleed (and risk bleeding out). After the surgery they placed a catheter in me so as to help slow down the bleeding. I still bled so very much though, that it was a major scare for me- especially since I was not told to expect it. I was also in a huge amount of pain for over a month. During this time I had to sit on a perennial donut, move very slowly, and take a lot of pain pills just to get through my normal work days. Oddly, taking a break from sitting every couple of hours and going for a short easy walk helped me the most (well, second to pain pills that is).
As I was healing I had a lot of blood clots that would periodically break loose. They were so big at first that I wasn't even sure how they managed to come out of my catheter. Their breaking loose never really hurt any more I otherwise was, and often the only way I would notice them would be because they would partially and very temporarily block my urine flow for a second or two. My urologist eventually told me that was all quite normal for radial cuts though, but I wish someone would have warned me first. When they took the catheter out after the first week I bled a lot more again, but it slowly and steadily became less and less over that first month of recovery, just as it did with my blood clots breaking loose. Interestingly, each time one would break loose I would bleed a lot more right afterwards (or again) for the next day or so. This went on for the second month, but eventually stopped. My associated pain also seemed to be loosely tied to the amount of my bleeding, with it too pretty much going completely away after the second month.
After the third month I was pretty well fully healed and no longer had to sit on a perennial donut. I was also able to fully return to all of my normal activities, exercises, etc. Unfortunately, my external sphincter was still automatically clamping down on me so tightly that after my muscle was fully healed that it could still once again fully clamp back shut again! I was still having to strain to pee, though thankfully I was not having to stain half as hard as before hand. In this aspect, the surgery was a partial success though it would need to be performed again.
For my second external urinary sphincterotomy, my urologist only did a linear cut at the 12 o'clock position (why I'm not sure, but I wish he hadn't). That is with me laying down, the cut is made from the center and straight up. With this, they again go in through your urethra and cut away only a portion of your sphincter. This single cut is made into the sphincter much deeper though. The idea of doing this is once healed it allows your sphincter's muscle to expand or stretch more so it can open more than before, but still allow you to have the same kind of control as a normal person would. I had the catheter in again for another week, and once again had a similar amount of bleeding and pain. Once again this lasted for about a month, with large blood clots that got smaller and less frequent with time. As with the first surgery, this one had me periodically bleeding and in ever decreasing pain for the second month. And as expected, by the end of the third month of recovery I was able to return to normal activities again.
For me, this second surgery did not help very much though. I was still having to strain to pee, though this time about 1/4 less (maybe about 3/4 less than I originally had been). I suppose this was once again a partial success, though again would need to be performed again. For my third surgery I had specifically asked my urologist to do another radial cut. My recovery for this was almost the exact same as my first and second times. However, after about two months of recovery I had to make a flight for a work trip from Florida to Hawaii. Going there was hard on my sphincter, and felt like it had set me back a few weeks on my overall recovery. I managed to get through my work there with pain pills and extra rest when ever I could. Unfortunately I still had to fly back home. That flight set me back at least a few more weeks again- almost right back to the beginning! My bleeding and pain was nearly unbearable this time though, and this time took me just over three more months to heal from it (over 5 months total recover that time)! If anyone gets this surgery done, please don't be as stupid as I was. You may feel mostly ok after two months with no more bleeding, but you are still far from being fully healed. I have to highly recommend against doing any kind of travel for at least three months after a sphincterotomy!
Even still, after I was fully healed and back to resuming normal activities after my third sphincterotomy I was still having to strain to pee. The odd thing was that I was back to having to fully strain again though. I had tried to self catheterize (which I had done hundreds and hundreds of times) and actually notice I had four points of resistance!?! Normally, when catheterizing you will notice a point of resistance when inserting it as you reach your external sphincter. Continuing to apply light pressure in inserting it and the catheter will eventually get past the sphincter and will begin to insert easily again. Once you get to the internal sphincter this will happen again. Get past this point and you will normally get a flow of pee. Well for me that time, this didn't happen. My first point of resistance felt normal enough, except I wasn't supposed to have much of an external sphincter any more right. Odd, but my second point of resistance was immediately behind that, and was much more difficult to get past. The third point only a little, and my fourth point I couldn't even get past no matter how much I wanted to.
Needless to say I made an emergency appt with my urologist and he did a colonoscopy on my the next day (and managed to get a catheter into me- with much difficulty). It turns out that my still having to strain all this time had combined with my healing and natural scarring in my urethra, and with the repeated surgeries, to create three new cysts AND to make my internal sphincter even tighter than before (hence the fourth resistance point I couldn't get past). All three cysts needed to be removed in a similar fashion as my sphincterotomies AND now my internal sphincter needed to be cut as well. Sheesh, I just couldn't get a break! Unfortunately my urologist couldn't do more than a shallow linear cut at the 12 o'clock in my internal sphincter, since the bleeding from it would have added to much on top of the bleeding from removing my cysts.
That last sphincterotomy was back in late October of 2015. I have once again fully healed from it, and should be getting the fifth one done about now. Except for one thing, I have an upcoming flight to Japan in April. There is no way in heck I'm getting it done now, so I get to wait till after April. For now, my external sphincter is finally opened up most of the way. My internal sphincter is opening up (automatically and unconsciously as it normally should be). There are times when my internal sphincter will be open and I will just pee freely with no control. This has been a much needed reprieve for me and is much more welcome for me than not being able to go at all. Unfortunately, my when my internal sphincter is normally closed my bladder continues to fill up. At some point I will still get a painful urge and need to pee. Except my internal sphincter still stays closed which forces me to push and strain again. Thankfully, this amount of straining is a mere fraction of what is used to be, and even this is only needing to be done half of the time since it seems to be open the other half of the time.
Overall, I have been through way too much bleeding and pain with each of these surgeries. That said, each one has been well worth it as it has been eliminating a constant and daily amount of pain and discomfort that I would otherwise have to live with for the rest of my life. And yes, I absolutely will go through it again to hopefully and fully eliminate my urges, pain and discomfort that comes with it, and the remain amount of straining I still have to live with.
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