JBB
02-05-2008, 06:26 AM
Sorry for the length of this. I'm trying to include as much info as possible hoping that someone my be able to help.
It has been awhile since I have posted primarily because I felt that I was doing fairly good. I am a 40 year old male and I'm really not sure what is wrong with me. I've struggled with what was diagnosed as bacterial prostatitis, chronic non-bacterial prostatitis, prostadynia, I've seen a IC expert who believes it is IC and at times my normal urologist has thought it is IC but he seems to go back and forth between a prostate condition and IC.
At any rate about 2 years ago I decided to treat it like IC as I didn't want to have a hydrodistension done. I went on a strict IC diet and began taking Cystoprotec I can't take it everyday but probably take it every other day. At any rate, it seemed to help I would go through periods of a couple of normal weeks and then a couple of bad days etc. On a bad day I feel like I don't empty my bladder when I urinate. My lower abdominal area feels like it has a lot of pressure on it. I usually assume because my bladder isn't empty and at times I'm sure it doesn't but almost everytime I have a scan in the DRs office it is empty but I can usually tell it is empty at those times. I usually sleep through the night without needing get up.
I recently have had several weeks of mostly bad days. I haven't changed my diet and have been taking more cystoprotek but it is not helping. I occasionally add arginine which seems to help but it gives me headaches if I take it regularly.
My Symptoms: Not what you would normally expect with IC. I only urinate about 3 times a day, but I feel like I don't empty my bladder and have significant pressure in my lower abdominal area. I usually measure the amount of water I drink and I sit at a desk all day (so no sweating). Some days my volume of urine is good and I can tell all is well but on bad days the volume seems much lower and the flow is not as good or lengthy and on those days I have the pressure/pain in the lower abdominal area. I typically have bladder spasms during these bad times as well. I use a heating pad frequently. It hurts me to work at my desk due to the pressure and have to lean back in my chair most of the time. I have had a somewhat extended belly for some time and had to go up a couple of pants sizes a couple of years ago due to the pressure feeling. On good days the bloated belly goes down a significant amount and my pants fit much looser. I also have significant inguinial canal discomfort. Many times I feel like I have a hernia on both sides. On one side, I even have a very soft area about 2 inches wide and 2 inches long that seems to protrude in my lower abdominal area and doesn't feel like there is a muscle wall under it compared to the other side. I've had it checked by several dr's and none of them think it is a hernia but all them notice what I'm talking about. I even had a CT scan which didn't show anything. It is usually that side of my lower abdominal area that has the most discomfort but recently the other side has started to hurt as well and I'm in a panic that whatever I have is getting worse. On bad days rather than getting the feeling that my bladder is overactive I panic more that it has stopped working and I will have to use a catheter the rest of my life. I feel like my bladder is so full at times that it is going to pop through my abdominal wall.
I'm scheduled for another CT Scan on Thursday as my urologist wanted to get a new look at my pelvic area due to the increased pain (by the way I had testicular cancer in 2001 treated with radiation) and probably the history of cancer. I would almost prefer it was cancer at least I now if may go away.
I know however that is not what is going on. I have some sort of bladder condition.
Does this sound like IC? If not any other ideas? What should be the next treatment options I should think about? I figure it is Elmiron or Instillations but I'm worried about the GI problems with the Elmiron and a catheter with the instillations. I've also been reluctant to have a cystoscope due really to fear. Is there anything I could try to get through this period of flare, if that is what it is.
It has been awhile since I have posted primarily because I felt that I was doing fairly good. I am a 40 year old male and I'm really not sure what is wrong with me. I've struggled with what was diagnosed as bacterial prostatitis, chronic non-bacterial prostatitis, prostadynia, I've seen a IC expert who believes it is IC and at times my normal urologist has thought it is IC but he seems to go back and forth between a prostate condition and IC.
At any rate about 2 years ago I decided to treat it like IC as I didn't want to have a hydrodistension done. I went on a strict IC diet and began taking Cystoprotec I can't take it everyday but probably take it every other day. At any rate, it seemed to help I would go through periods of a couple of normal weeks and then a couple of bad days etc. On a bad day I feel like I don't empty my bladder when I urinate. My lower abdominal area feels like it has a lot of pressure on it. I usually assume because my bladder isn't empty and at times I'm sure it doesn't but almost everytime I have a scan in the DRs office it is empty but I can usually tell it is empty at those times. I usually sleep through the night without needing get up.
I recently have had several weeks of mostly bad days. I haven't changed my diet and have been taking more cystoprotek but it is not helping. I occasionally add arginine which seems to help but it gives me headaches if I take it regularly.
My Symptoms: Not what you would normally expect with IC. I only urinate about 3 times a day, but I feel like I don't empty my bladder and have significant pressure in my lower abdominal area. I usually measure the amount of water I drink and I sit at a desk all day (so no sweating). Some days my volume of urine is good and I can tell all is well but on bad days the volume seems much lower and the flow is not as good or lengthy and on those days I have the pressure/pain in the lower abdominal area. I typically have bladder spasms during these bad times as well. I use a heating pad frequently. It hurts me to work at my desk due to the pressure and have to lean back in my chair most of the time. I have had a somewhat extended belly for some time and had to go up a couple of pants sizes a couple of years ago due to the pressure feeling. On good days the bloated belly goes down a significant amount and my pants fit much looser. I also have significant inguinial canal discomfort. Many times I feel like I have a hernia on both sides. On one side, I even have a very soft area about 2 inches wide and 2 inches long that seems to protrude in my lower abdominal area and doesn't feel like there is a muscle wall under it compared to the other side. I've had it checked by several dr's and none of them think it is a hernia but all them notice what I'm talking about. I even had a CT scan which didn't show anything. It is usually that side of my lower abdominal area that has the most discomfort but recently the other side has started to hurt as well and I'm in a panic that whatever I have is getting worse. On bad days rather than getting the feeling that my bladder is overactive I panic more that it has stopped working and I will have to use a catheter the rest of my life. I feel like my bladder is so full at times that it is going to pop through my abdominal wall.
I'm scheduled for another CT Scan on Thursday as my urologist wanted to get a new look at my pelvic area due to the increased pain (by the way I had testicular cancer in 2001 treated with radiation) and probably the history of cancer. I would almost prefer it was cancer at least I now if may go away.
I know however that is not what is going on. I have some sort of bladder condition.
Does this sound like IC? If not any other ideas? What should be the next treatment options I should think about? I figure it is Elmiron or Instillations but I'm worried about the GI problems with the Elmiron and a catheter with the instillations. I've also been reluctant to have a cystoscope due really to fear. Is there anything I could try to get through this period of flare, if that is what it is.