male, don't know what to do anymore

[crazyivan45 ICN Member Find all posts View Profile Close crazyivan45]

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

[MamaZ ICN Member Find all posts View Profile Close MamaZ]

I'm sorry you are suffering. And suffering made that much more unbearable because of finances and misdiagnoses. Sounds like A LOT of stress.

Do you have support from friends and/or family? Are you able to find ways of coping with the stress -- meditation, exercise, etc. etc.?

Having had this on and off for years (I developed it in my late teens/early 20s), I can tell you I've heard the complete opposite -- when surgeons go in and remove bladders pain often remains. Many times it's not the bladder that's the problem, it's the nerve endings within the pelvic area. They don't always stop firing pain signals when organs are removed. And then what? You have no bladder.

Off the top of my head: have you tried rectal valium suppositories? Hydroxyzine? Those are not expensive treatments. What about physical therapy? Some of your symptoms really do seem to have a pelvic floor dysfunction type of ring to them. Perhaps you could barter for services...

Where do you live? You definitely need a professional who is compassionate and thorough -- someone who will offer you some sort of treatment plan to try and if it fails, will follow through with more ideas.

I certainly know what it's like to be given the run around and thrown medication at because they simply didn't know what to do with you. It's awful.

[crazyivan45 ICN Member Find all posts View Profile Close crazyivan45]

I am currently on elavil (amitryptyline) and while it worked great for about a week, its not having much of an effect anymore. On 10mg, tried upping to 20 but it made me a zombie and suicidal. Don't really have a lot of support from family and friends. Friends don't understand, family (parents) are going through bankruptcy and forclosure, so they have too many of their own problems. I have tried klonazepam (was prescribed it years ago for anxiety, kept it around in case of emergencies) and it has helped. So have regular muscle relaxers. Can PFD symptoms get worse with certain foods or drinks? have not tried hydroxyzine, but the first uro gave me sudafed to try and stop the urine leak and i ended up being unable to urinate after a few days and had to cath until my prostate shrunk down a bit. Also, my pain actually improves when my bladder fills up and usually starts or gets worse when my bladder is empty. Spasms are also less intense when my bladder is full then when it is empty

Currently live in Memphis, TN

[MamaZ ICN Member Find all posts View Profile Close MamaZ]

I am currently on elavil (amitryptyline) and while it worked great for about a week, its not having much of an effect anymore. On 10mg, tried upping to 20 but it made me a zombie and suicidal. Don't really have a lot of support from family and friends. Friends don't understand, family (parents) are going through bankruptcy and forclosure, so they have too many of their own problems. I have tried klonazepam (was prescribed it years ago for anxiety, kept it around in case of emergencies) and it has helped. So have regular muscle relaxers. Can PFD symptoms get worse with certain foods or drinks? have not tried hydroxyzine, but the first uro gave me sudafed to try and stop the urine leak and i ended up being unable to urinate after a few days and had to cath until my prostate shrunk down a bit.

Currently live in Memphis, TN

I'm on Elavil, too, so I can relate to the zombie feeling. Hydroxyzine has similar properties but resolves itself after a week or so. At least it did for me. I feel like those two drugs have had the biggest impact on my LEVEL of pain. Still have it, but it's less. And it took a few months. I actually think hydroxyzine has been more helpful but it's hard to tell.
I have no idea how you'd do it but I've found that lidocaine gel directly into the urethra helps. My biggest complaint is urethral burning and it's really tricky to find anything that stays there long enough to provide much long-term relief. Combined with the valium suppositories I've found them really successful for the urethral aggravation.

I think if you have a problem with your pelvic floor that's causing major inflammation/spasms that radiates throughout your pelvic area it only makes sense that foods/drinks could exacerbate it.

Does this list help at all? Doesn't look like anyone's in Memphis but I don't know where those smaller cities are.

How about this list?
Edward Stanford might be someone you should talk with. He's a urogynecologist in Memphis so if he doesn't see men, maybe he could recommend a Physical therapist he refers his patients to. I've heard such amazing things about what PTs can do. Go get a consult with a PT who specializes in pelvic problems.

[crazyivan45 ICN Member Find all posts View Profile Close crazyivan45]

I am going to try and see my GP again on Friday. Never really considered PFD, but maybe he can diagnose or at least recommend someone who can treat/diagnose it. I've read that low doses of a muscle relaxer such as Valium (2mg, 3 times a day) have helped people with PFD, without causing drowsyness or dependency. Is that something I could talk to him about? I don't want to come off as a pill seeking junkie, but at this point I'd like to at least give it a try, just to see if it has any effect at all.

[1982 ICN Member Find all posts View Profile Close 1982]

I'm a 29 year old male with almost the same symptoms. Been told over and over I'm too young to be having these problems. Mine started out with burning on urination a year ago. The Dr.s gave me leviquin and it cleared up. About six months latter the constant feeling like I needed to urinate started. I've had two cystos with hydro distention. Dr's said that my bladder was vascular and that if I have Ic it is the most mild they have seen in thirty years. Let me tell you it doesn't feel mild. I'm with you I'd have surgery tomorrow if it was a guaranteed fix, but it definitely isn't and as bad as it is now good decisions are never rash ones..... That sucks to hear when your hurting. Elavil didn't work for me nor did Elmiron. I've had physical therapy and it helped a little the only therapist I could find who delt with pfd had never worked with a guy before...... I've been told my prostate feels boggy but every time I have a prostate examine it burns and hurts like crazy. Do the prostate examines hurt for you? Were you put under for the cysto? I'm considering going to San Fransisco to See Dr. Jerome Wiess........ Has anyone on this sight had treatment from him?

I literally feel your pain man this is horrible hopefull we both can find some sort of remisssion....

[sailawaygrl ICN Member Find all posts View Profile Close sailawaygrl]

Hi CrazyIvan,

welcome to the ICN. I am so sorry that you are having all the problems right now. It is so hard to say whether you have IC or not and without an accurate diagnosis you could just be wasting more time and money. I would suggest continuing with the Dr search, you should have access to a relatively large number of Dr being in Memphis, I would think. I certainly don't know for sure. If I were in your position I would spend a lot of time making phone calls to physicians and talking to them about what urology problems they treat. My general physician treats some IC patients so you don't always have to find a uro. Who is prescribing you the elavil? It might be worth it to talk to them about IC and ask for hydroxyzine prescription, it isn't expensive at all. It helps me a lot. It is the same thing essentially as Zyrtec but most of us take much higher doses. I am hoping that some of our male members will stop by and give you some good advice.

Have you read the new AUA guidelines for diagnosing and treating IC? I was just at my Dr today and we were discussing them, he helped to write them. Read through them if you haven't already, they will give you a good reference for speaking with Dr's. In fact you might want to take a copy to your Dr with you, it might help.

I wish you the best and hope that you are able to find answers soon.

Sandra

[MamaZ ICN Member Find all posts View Profile Close MamaZ]

I am going to try and see my GP again on Friday. Never really considered PFD, but maybe he can diagnose or at least recommend someone who can treat/diagnose it. I've read that low doses of a muscle relaxer such as Valium (2mg, 3 times a day) have helped people with PFD, without causing drowsyness or dependency. Is that something I could talk to him about? I don't want to come off as a pill seeking junkie, but at this point I'd like to at least give it a try, just to see if it has any effect at all.

I'm not all that enthusiastic about going the GP route for referrals for this -- if only because I don't think they know the difference between a regular urologist and a doctor who specializes in CHRONIC PELVIC PAIN. They are not mutually exclusive, you know what I mean?
My GP knew a little bit about IC -- he knew enough to tell me that Elavil and Elmiron are the main drugs and help a lot of people...and that he could just prescribe me some and send me on my way. What he didn't mention is that this is much more complex than that and that while those drugs DO help a lot of people, there are a lot of people that get zero relief with them.

And I'll also say that I spent many, many years seeking a doctor to confirm that I do in fact have IC. Only recently have pelvic pain specialists begun to admit that just because you have a normal cystoscopy and a normal looking bladder on hydrodistension does NOT mean you don't have IC. They go entirely by symptoms now. So if you can use me as an example, save yourself a lot of frustration and seek out a professional who gets this and can help you NOW. And I'm no expert but your symptoms sure as heck sound like IC to me, especially since you've ruled out everything else.

Yes, valium at low doses can help and don't run the risk of dependency -- but suppositories get RIGHT at the source of the pain. It acts locally. Just my opinion.

I just found this the other day and found it interesting. Thought you might, too...
Peeling back the Onion: The Urethral Burning Layer

[earthlady ICN Member Find all posts View Profile Close earthlady]

This is just a thought but since I didn't see this listed in your post I thought I would mention it. Have you had your pelvic floor muscles assessed by a therapist or pelvic pain specialist? My therapist works with both men and women for this, so pelvic floor problems are not just related to females. Your description of having a feeling of a golf ball rolling around in there made me think of this and sometimes this is what it feels like when there is pelvic floor dysfunction.

[VickiB ICN Member Find all posts View Profile Close VickiB]

I certainly know what it's like to be given the run around and thrown medication at because they simply didn't know what to do with you. It's awful.

Yes, me too. I lost count of how many doctors I saw, and paid, for nothing. I'd have to say that was by far the darkest time for me. I'm sorry you're having to go through this!

I hear you on the costs, especially that of Elmiron! Sheesh! I took it for a while but finally had to give it up due to the expense. I replaced it with CystoProtek which turned out to work equally as well for me. You might want to consider giving that a try.

I hope you can get some kind of diagnosis soon and then find something that works to quiet your symptoms!

Vicki

[flowerangela ICN Member Find all posts View Profile Close flowerangela]

ivan
im 24 in tn with ic also...please pm me or im me if you need someone to talk to.

[crazyivan45 ICN Member Find all posts View Profile Close crazyivan45]

Thanks everyone for your replies and support. I have an appointment with my GP tomorrow to discuss trying a muscle relaxer. The more I read about PFd, the more it sounds like thats my issue. Bladder doesnt hurt when full, the leaking, enlarged prostate, no nocturia but bad daytime frequency/urgency...From what ive read these are all indicative of PFD. It could be I have both, but I just don't know. Its weird that Pyridium used to work wonders, but now, while I can actually feel my bladder go numb, I still have pain. Maybe the pain isnt coming from my bladder, but from somewhere else? I associate the pain with my bladder but I never have both pain and frequency at the same time, its always one or the other, but never both at the same time. Everything down there just feels really tense all the time. When i focus on relaxing my pelvic muscles everything seems to subside. Unfortunately I cannot get them to untense for very long. As soon as my concentration shifts a little the pain or frequency comes right back. For a long time i thought this was chronic prostatitis, but then the pain started and thats what got me looking in to IC

[VickiB ICN Member Find all posts View Profile Close VickiB]

This has to be confusing and frustrating for you. So many possibilities to consider, prostrate, PFD, IC, etc, and all of that takes time & money! I hope your appointment with your GP tomorrow results in some sort of forward progress.

[crazyivan45 ICN Member Find all posts View Profile Close crazyivan45]

Went and met with my GP. When I explained everything and mentioned pelvic floor dysfunction he said 'that makes complete sense to me. That may be the problem but I can't diagnose it.' He did agree to try me on a regular muscle relaxer to see if it made any difference. He prescribed 500mg of chlorzoxazon twice daily. It worked great!....for the first few days. Now, I am again having horrible bladder spasms but at least the pain has been significantly reduced. So far, every medication I have tried to calm my bladder down has worked wonderfully in the beginning, but after a short time it has simply stopped working. I have some cystoprotec on order to see if that does anything, but at this point I am not hopeful.

This has been my main issue all along, and the one that no treatment has had any effect on. Are there any other OAB meds besides oxybutynin that are available generic? I tried Toviaz and Vesicare and both worked great for about two weeks, then they stopped having any effect. But even if they continued to work I would not be able to afford them for long. I had read somewhere that the non extended release version of sanctura was now generic, but none of the pharmacies around here have it in generic form. Is this in fact available generic? For those o you who have tried oxybutynin, did it work for you? If so, how bad were the side effects? Ive kind of found myself in a pretty bad position here, as I know there are many treatments available but I simply cannot afford any of the more advanced treatments. I know this is wrong and probably incredibly stupid but I am silently hoping that another urologist will tell me the solution is to remove my prostate and/or bladder and that will make this all go away. I know thats not true, but I'm running out of options. At least I could count on my insurance to cover part of if not most of a surgery. Its this no prescription thing that is (almost literally) killing me

[vanilla ICN Member Find all posts View Profile Close vanilla]

Have you looked into buying medicines online from different countries? I know there is someone on this site who buys their Elmiron from Italy and supposedly pays much less. I believe the Italian Elmiron begins with an F. Just a thought. A friend told me the other day that we pay so much more for our medicines here in the US because pharmaceutical companies pass the cost of research onto the US consumer.