External Sphincter Dyssynergia (Desd)

[ThomasInWVa]

I’ve recently returned from an overnight stay at my local hospital because I was unable to urinate yesterday. I first notice that I was retaining urine around 2pm. I didn’t feel as though I had to pee which has happened many times before but it has been awhile since I went to the ER. I decided to go around 3pm when I started to get a headache and I could really feel the weight of the urine build up. This time I only waited 5 minutes before they took me back and did the ultrasound and verified that I was retaining urine.

This time urologist was available and he had me outfitted with a foley cath and because of the difficult cath procedure, he had me stay overnight. We talked about my history of back problems and he suspects external sphincter dyssynergia (DESD). Which can have very serious problems. However my options are very limited and none are really temporary, except a caths – and they have their problems. I don’t do drugs and even if I did, the ones they would use would make me unable to do my job. The surgical option of a sphincterotomy doesn’t have a great success rate and prevents the future placement of a stent. And stents are not really reversible. They say they are but not really. There is very little data on how well the urolume stent can be removed after the tissue grows over it. I asked about botox injections because I’ve heard that they are temporary but that procedure really doesn’t exists yet. It was tested by a few places a couple of years ago but he hasn’t heard of any trials in progress and it isn’t something you can just do hoping it might work.

I have to consult with other urologists but it looks like I may have to opt for the stent if this continues to happen. I’m not about to jump into this anytime soon unless this happens more often.

Right now I can feel that “that” muscle is sore and weak. But at this point I’d rather be very wet than very dry.

And is it me or do these antibiotics make me pee more?

[DailyDi]

Not familiar with that condition (did google it.) Best of luck to you!

Yes, Antibiotics make me pee more, and also make my bladder more sensitive.

You should join our incontinence groups, might be some people with DESD there.

http://incont.org/index.php?

http://health.groups.yahoo.com/group/Incont/

[XyXy]

I have DESD, maybe. That is to say, one doctor diagnosed me with it after a fluoroscopy, and some other tests, and a second doctor thinks it may actually be the internal sphincter that is causing the problem. I suspect that both sphincters are the problem. Anyways, I have become well versed on this topic as a result. First, botox injections into the external sphincter are available! I know because I've had 3 of them, done through the V.A. I believe that my body has developed an immunity to them however, because each subsequent injection worked for less and less time. Maybe I can eat botulism now without worry! The stents are reversable, much of the time. I have seen a study where the majority of them were removable (although with difficulty) after tissue grew over them. Still, stents are not recommended. For awhile I was trying to get a sphincterotomy, but doctors are apparently very hesitant to do this unless you have a major spinal cord injury, which I do not. Instead, they want to subject me to ANOTHER fluoroscopy to confirm or re-diagnose me. Anyhow, despite my current doctor's hesitations about the sphincterotomy, I'm still convinced that it's the best treatment out there for DESD. True it isn't 100% successful, but for many people it does the trick, and if you don't do something, DESD will cause life-threatening problems to the upper urinary system, like I am dealing with now. Good luck, because I certainly haven't been having much luck with my DESD.

I’ve recently returned from an overnight stay at my local hospital because I was unable to urinate yesterday. I first notice that I was retaining urine around 2pm. I didn’t feel as though I had to pee which has happened many times before but it has been awhile since I went to the ER. I decided to go around 3pm when I started to get a headache and I could really feel the weight of the urine build up. This time I only waited 5 minutes before they took me back and did the ultrasound and verified that I was retaining urine.

This time urologist was available and he had me outfitted with a foley cath and because of the difficult cath procedure, he had me stay overnight. We talked about my history of back problems and he suspects external sphincter dyssynergia (DESD). Which can have very serious problems. However my options are very limited and none are really temporary, except a caths – and they have their problems. I don’t do drugs and even if I did, the ones they would use would make me unable to do my job. The surgical option of a sphincterotomy doesn’t have a great success rate and prevents the future placement of a stent. And stents are not really reversible. They say they are but not really. There is very little data on how well the urolume stent can be removed after the tissue grows over it. I asked about botox injections because I’ve heard that they are temporary but that procedure really doesn’t exists yet. It was tested by a few places a couple of years ago but he hasn’t heard of any trials in progress and it isn’t something you can just do hoping it might work.

I have to consult with other urologists but it looks like I may have to opt for the stent if this continues to happen. I’m not about to jump into this anytime soon unless this happens more often.

Right now I can feel that “that

[dlsmd]

I’ve recently returned from an overnight stay at my local hospital because I was unable to urinate yesterday. I first notice that I was retaining urine around 2pm. I didn’t feel as though I had to pee which has happened many times before but it has been awhile since I went to the ER. I decided to go around 3pm when I started to get a headache and I could really feel the weight of the urine build up. This time I only waited 5 minutes before they took me back and did the ultrasound and verified that I was retaining urine.

This time urologist was available and he had me outfitted with a foley cath and because of the difficult cath procedure, he had me stay overnight. We talked about my history of back problems and he suspects external sphincter dyssynergia (DESD). Which can have very serious problems. However my options are very limited and none are really temporary, except a caths – and they have their problems. I don’t do drugs and even if I did, the ones they would use would make me unable to do my job. The surgical option of a sphincterotomy doesn’t have a great success rate and prevents the future placement of a stent. And stents are not really reversible. They say they are but not really. There is very little data on how well the urolume stent can be removed after the tissue grows over it. I asked about botox injections because I’ve heard that they are temporary but that procedure really doesn’t exists yet. It was tested by a few places a couple of years ago but he hasn’t heard of any trials in progress and it isn’t something you can just do hoping it might work.

I have to consult with other urologists but it looks like I may have to opt for the stent if this continues to happen. I’m not about to jump into this anytime soon unless this happens more often.

Right now I can feel that “that” muscle is sore and weak. But at this point I’d rather be very wet than very dry.

And is it me or do these antibiotics make me pee more?

maby i should have my uero look in to that because some of these problems i have 2

[moondog]

Hi Thomas,

I had three sphincterotomies and a bladder neck resection to treat my DESD. The operations were eventually successful in that they reduced the pressure in my bladder and saved my kidneys and left me dripping all the time, but I had an unfortunate side effect. I developed severe urethral scarring due to the surgeries. To treat the scarring they put in stents, about 3 or 4, if I remember correctly. Unfortunetly the stents didn't stop the scarring from closing off my urethra so I had to have a urethroplasty. The doctor cut out all of the stents which the tissue and scarring had grown over and left me with a urethral opening below my scrotum by pulling up my scrotum into my bladder. The doctor that performed this surgery was and probably still is the best urologic surgeon in the United States. I had really good insurance at that time. So now I drip constantly out an opening below my scrotum which connects directly to my bladder. I no longer have any problems whatsoever except dealing with the incontinence; diapers are my only option. It was pure hell with the scarring and the strictures the first sugeries caused; imagine taking a stiff plastic catheter and jamming it with all the strength you have to force it into your bladder. I was in that situation for over a year. I think if I had to do it over I would start with the stents because the risk of scarring and strictures from a sphincterotomy are too great.

Moondog

[diapertime42]

Hi Thomas,

I had three sphincterotomies and a bladder neck resection to treat my DESD. The operations were eventually successful in that they reduced the pressure in my bladder and saved my kidneys and left me dripping all the time, but I had an unfortunate side effect. I developed severe urethral scarring due to the surgeries. To treat the scarring they put in stents, about 3 or 4, if I remember correctly. Unfortunetly the stents didn't stop the scarring from closing off my urethra so I had to have a urethroplasty. The doctor cut out all of the stents which the tissue and scarring had grown over and left me with a urethral opening below my scrotum by pulling up my scrotum into my bladder. The doctor that performed this surgery was and probably still is the best urologic surgeon in the United States. I had really good insurance at that time. So now I drip constantly out an opening below my scrotum which connects directly to my bladder.

So your urethral opening is between your scrotum and anus?

Does this put you at higher risk of bladder infections? I would think so, if your

sphincters no longer close....

[moondog]

I get urinary tract infections about once every three years and usually a weeks worth of antibiotics clears them up with no problem. Actually my health is so much better now because I am not constantly having surgeries like I was before. I think the stents are a better option for DESD because they don't initiate the scarring and strictures like sphincterotomies do and I know that they can be removed.