Been to 2 uro's, the er, school doc, minor med, and my gp. Always the same diagnosis: 'I don't know.' Various meds tried, only one that semi works is Elavil, and even that doesnt really help all that well. Every doctor has given me the same prognosis: 'You're too young to be having these problems. Maybe they'll just go away on their own.' Ive been told time and again that my prostate is 'significantly enlarged,' but no one seems to want to do anything about it. I mentioned having it removed if it was really the problem and the second uro laughed at me. The only one who has even remotely considered this being IC is my GP, and even he still thinks its a prostate issue. My urgency/frequency isnt as severe as it once was, but the pain is gradually becoming more frequent and more intense. There is absolutely no rime or reason to it. Tried following the strict diet, still had random flareups. Tried eating everything on the no list, flareups again remained random. Some days I can eat half a pizza and drink a six pack of beer and be absolutely fine. Some days I'll eat nothing but 'safe' foods and drink water and be in agony for hours. Some days I can urinate fine, some days I have to use a catheter because I am unable to urinate. I feel like I am becoming food/drink sensitive, but if thats the case I must be sensitive to literally everything on the planet, given the lack of correlation between specific foods/drinks and symptoms. Every doctor I have been to seems to be more concerned with taking my money then actually figuring out whats wrong with me and trying to treat it. I work myself to death just to pay the bills, my insurance is complete garbage (1500 deductible, no rx coverage, no co-pay for dr visits), I have very little money, and in another month I will be out of grad school and will have to begin repaying around $80k in student loans. GP wrote me an rx for elmiron, pharmacy wanted $700. Yeah, right. I could MAYBE afford the 6 month trial, then I would be bankrupt. I've done some reading on rescue instills and it seems like they are hit or miss as far as insurance covering them, and without coverage they can exceed $1000 each treatment. Thats just not affordable, and won't be for the foreseeable future.
As it stands right now I have a few grand I have saved up in case of emergencies, but come June if I do not get a pretty significant raise or a better job I am going to lose my apartment due to having to repay almost $1000 a month in student loans. There is simply no way in h*ll I can even think about affording some of these medications, even if by some miracle they were to work for me (ever since I was a child every medication I have been on long term for various issues has always stopped working after a short while. Not sure why. My body just adapts to them and they simply cease to work.)
I've read that nearly 40% of IC patients eventually are unable to work. I don't know if thats true, but if thats the case then what hope do i have for the future? I am trying to have as much fun as I can now in spite of this issue, because I have a very bad feeling that whatever this is is going to keep getting worse, until the day when I no longer have a reason to fight anymore.
As I have yet to be officially diagnosed, I am still not 100% sure this is IC. But I have no idea what else it could be, and my symptoms fit the disease. Given that meds are basically off the table, what are the chances of a doctor removing both my bladder and prostate? Yes, I know this is drastic and extreme. But from everything ive read (on this forum and elsewhere) it seems like the only people who are ever actually 'cured' are those who have had their bladders removed, and of those it seems the ones who've gone with a urostomy bag have had the best results. I realize this is probably not the case, but it seems like the only people who have found long term relief are those who have had the surgery or those who have been lucky enough to find a medication that works for them and an insurance plan that will actually pay for it. Believe me, I don't want to have to have this done. But if this is going to be the end result anyways I'd rather skip the years and years of pain, expense, and failed treatments and just get this over with now. Any insight would be appreciated, because at this point I really don't know how much longer I can fight this, or how many more days I am willing to suffer through.
Background:
Male, 24 years old, in good health otherwise
Symptoms first appeared September 2010, started with frequency/urgency and urethral burning
Started having bladder/pelvic pain in November 2010, gradually intensified since then.
'Official' diagnosis is Chronic Prostatitis
Meds tried and failed:
Flomax - worked for 5 days, ceased working
Rapaflo - worked for 2 weeks, ceased working
Doxycycline - Felt relief for a week, ceased working
Cipro - no relief, even after 6 weeks
Vesicare - worked for a week, ceased working
Toviaz - worked for a week, ceased working
Ibuprofen - no effect one way or another
Loratabs for pain - no effect
Aleve for pain - worked ok for a few weeks, no longer effective
Pyridium - Worked great at first, only took during flares. No longer effective
UTA - Never worked
prostaQ - No effect, even after 4 months
Chondrontine Sulfate - Benn on it for a month, have not seen any effect yet
Saw palmetto - been on it for 2 months, no effect as of yet
Tests/procedures done:
PSA test - well below dangerous levels
Cystoscopy - Bladder looked healthy
Multiple pelvic ultrasounds - all revealed enlarged prostate, no other issue
DRE - 'significantly' enlarged prostate
Meatoplasty performed November 2010 to correct stricture - no improvement in symptoms
Foley catheter placed during er visit due to 3 days of continuous bladder spasms October 2010 - symptoms improved while catheter was in, stricture formed as a result of catheter
Blood tests to check for any abnormalities - everything came back fine
Main Symptoms
constant urgency/frequency/bladderspasms
Burning in pelvis/bladder area
Feels like there is a golf ball rolling around in my pelvis
Occasional rectal burning
Difficulty urinating, starts/stops and split stream
Leaking urine after urniation
Leaking urine while running or going up/down stairs
Bladder spasms always worse after defecating
Sometimes it feels like im peeing through a funnel
Constant bladder/pelvic pressure
As it stands right now I have a few grand I have saved up in case of emergencies, but come June if I do not get a pretty significant raise or a better job I am going to lose my apartment due to having to repay almost $1000 a month in student loans. There is simply no way in h*ll I can even think about affording some of these medications, even if by some miracle they were to work for me (ever since I was a child every medication I have been on long term for various issues has always stopped working after a short while. Not sure why. My body just adapts to them and they simply cease to work.)
I've read that nearly 40% of IC patients eventually are unable to work. I don't know if thats true, but if thats the case then what hope do i have for the future? I am trying to have as much fun as I can now in spite of this issue, because I have a very bad feeling that whatever this is is going to keep getting worse, until the day when I no longer have a reason to fight anymore.
As I have yet to be officially diagnosed, I am still not 100% sure this is IC. But I have no idea what else it could be, and my symptoms fit the disease. Given that meds are basically off the table, what are the chances of a doctor removing both my bladder and prostate? Yes, I know this is drastic and extreme. But from everything ive read (on this forum and elsewhere) it seems like the only people who are ever actually 'cured' are those who have had their bladders removed, and of those it seems the ones who've gone with a urostomy bag have had the best results. I realize this is probably not the case, but it seems like the only people who have found long term relief are those who have had the surgery or those who have been lucky enough to find a medication that works for them and an insurance plan that will actually pay for it. Believe me, I don't want to have to have this done. But if this is going to be the end result anyways I'd rather skip the years and years of pain, expense, and failed treatments and just get this over with now. Any insight would be appreciated, because at this point I really don't know how much longer I can fight this, or how many more days I am willing to suffer through.
Background:
Male, 24 years old, in good health otherwise
Symptoms first appeared September 2010, started with frequency/urgency and urethral burning
Started having bladder/pelvic pain in November 2010, gradually intensified since then.
'Official' diagnosis is Chronic Prostatitis
Meds tried and failed:
Flomax - worked for 5 days, ceased working
Rapaflo - worked for 2 weeks, ceased working
Doxycycline - Felt relief for a week, ceased working
Cipro - no relief, even after 6 weeks
Vesicare - worked for a week, ceased working
Toviaz - worked for a week, ceased working
Ibuprofen - no effect one way or another
Loratabs for pain - no effect
Aleve for pain - worked ok for a few weeks, no longer effective
Pyridium - Worked great at first, only took during flares. No longer effective
UTA - Never worked
prostaQ - No effect, even after 4 months
Chondrontine Sulfate - Benn on it for a month, have not seen any effect yet
Saw palmetto - been on it for 2 months, no effect as of yet
Tests/procedures done:
PSA test - well below dangerous levels
Cystoscopy - Bladder looked healthy
Multiple pelvic ultrasounds - all revealed enlarged prostate, no other issue
DRE - 'significantly' enlarged prostate
Meatoplasty performed November 2010 to correct stricture - no improvement in symptoms
Foley catheter placed during er visit due to 3 days of continuous bladder spasms October 2010 - symptoms improved while catheter was in, stricture formed as a result of catheter
Blood tests to check for any abnormalities - everything came back fine
Main Symptoms
constant urgency/frequency/bladderspasms
Burning in pelvis/bladder area
Feels like there is a golf ball rolling around in my pelvis
Occasional rectal burning
Difficulty urinating, starts/stops and split stream
Leaking urine after urniation
Leaking urine while running or going up/down stairs
Bladder spasms always worse after defecating
Sometimes it feels like im peeing through a funnel
Constant bladder/pelvic pressure
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