Aa
beachbum
Dr pho,
As I am out of options I decided why not ask someone on a forum. I am a 40 year old male with chronic priapism and a multitude of other health symptoms and issues. It all s tarted with priapism in the 90s, when it first occurred I really had never heard of such a thing, It lasted at least half a day with me eventually using ice packs and hot showers before it would subside, extremely painful to touch but it only happened the one time so being the "manly man" I never went to a doctor I went to work as normal, it happened again around a year later and I once again gutted it out and dismissed it. In 2000 it came back with a vengance, 3 sometimes 4 days a week with as many as 17 emergency room visits in a month timeframe, usually a shot of terbutelene will do the job and morphine or dilauded in iv, 6 times to date it hasnt with penile irrigation and an informal shunt installed, even the shunt did not work as a week later it had to be drained again, through all of this I have lost just about my entire life, job wife house and most important my health insurance, I currently go to the va medical center where i find my care is minimal, all the urologist said is he thinks I know more about the subject then anyone and "you know what to do when it happens", well to be honest ive gone 19 hours in pain in one episode before it subsided, if I went to the er every time it happened I may as well rent a room there. All the obvious reasons for this occuring have been ruled out, my oncologist at the va suggested " I should sleep in an up right position"
I have also had pulmonary embolism as a result and an ivc filter installed as well as permanant use of cumadin. It still happens 3-4 days a week for periods of 4-6 hours and more in some cases but i dont even bother to go to the er anymore, just take pain meds and gut it out till it goes away.
After all of that my question is am I alone with this? Are there any more people like me out there and if not is there a research organization somewhere who wants to use me as a guinea pig, I had a lot of exposure to radiation in the air force, as well as high pcb exposure , ton of other chemicals.
My other symptoms,
Herniated disc l4-l5 , bulging disc l5 s1, c4-c5-c6-c7, surgery corrected herniation in 2004
No feeling in right foot right three toes, constant leg pain
High ringing in right ears for minutes at a time
eyes going blurry sometimes for days, loss of balance and i fall
some days weak to the point its hard to s tand long enough to take a shower.
I dont use drugs however these days i take percoset or vicodin all day every day to kill the pain, I do smoke and drink beer on top of those pills when the pain is so intense I just want to pass out and forget i even woke up. And for those who read this and may be interested priapism is extremely painful unlike any you can imagine at times. Ive read this forum and alot are concerned over permanant damage. If you have to question whether its really priapism then it isnt.
And yes our wonderful social security system turned me down, it seems they dont give disabilty for having a constant erection :). any Ideas to ask my doctor to meybe test for would be appreciated.
As I am out of options I decided why not ask someone on a forum. I am a 40 year old male with chronic priapism and a multitude of other health symptoms and issues. It all s tarted with priapism in the 90s, when it first occurred I really had never heard of such a thing, It lasted at least half a day with me eventually using ice packs and hot showers before it would subside, extremely painful to touch but it only happened the one time so being the "manly man" I never went to a doctor I went to work as normal, it happened again around a year later and I once again gutted it out and dismissed it. In 2000 it came back with a vengance, 3 sometimes 4 days a week with as many as 17 emergency room visits in a month timeframe, usually a shot of terbutelene will do the job and morphine or dilauded in iv, 6 times to date it hasnt with penile irrigation and an informal shunt installed, even the shunt did not work as a week later it had to be drained again, through all of this I have lost just about my entire life, job wife house and most important my health insurance, I currently go to the va medical center where i find my care is minimal, all the urologist said is he thinks I know more about the subject then anyone and "you know what to do when it happens", well to be honest ive gone 19 hours in pain in one episode before it subsided, if I went to the er every time it happened I may as well rent a room there. All the obvious reasons for this occuring have been ruled out, my oncologist at the va suggested " I should sleep in an up right position"
I have also had pulmonary embolism as a result and an ivc filter installed as well as permanant use of cumadin. It still happens 3-4 days a week for periods of 4-6 hours and more in some cases but i dont even bother to go to the er anymore, just take pain meds and gut it out till it goes away.
After all of that my question is am I alone with this? Are there any more people like me out there and if not is there a research organization somewhere who wants to use me as a guinea pig, I had a lot of exposure to radiation in the air force, as well as high pcb exposure , ton of other chemicals.
My other symptoms,
Herniated disc l4-l5 , bulging disc l5 s1, c4-c5-c6-c7, surgery corrected herniation in 2004
No feeling in right foot right three toes, constant leg pain
High ringing in right ears for minutes at a time
eyes going blurry sometimes for days, loss of balance and i fall
some days weak to the point its hard to s tand long enough to take a shower.
I dont use drugs however these days i take percoset or vicodin all day every day to kill the pain, I do smoke and drink beer on top of those pills when the pain is so intense I just want to pass out and forget i even woke up. And for those who read this and may be interested priapism is extremely painful unlike any you can imagine at times. Ive read this forum and alot are concerned over permanant damage. If you have to question whether its really priapism then it isnt.
And yes our wonderful social security system turned me down, it seems they dont give disabilty for having a constant erection :). any Ideas to ask my doctor to meybe test for would be appreciated.
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