Interstitial Cystitis

[Guest]

I have never met another man yet with IC symptoms, but i have had them for a year and a half and find it almost impossible to cope with. I have even been to some of the best doctors on the east coast. I have been through two cystos, all different kinds of instillations, DMSo's, and oral meds and nothing works! It's beyond frustrating. Heavy narcotics are damaging but that is the only way to go for me for any relief right now? Can i please get any kind of feedback. I would appreciate it so much!!!

[Guest]

IC is uncommon, but my no means rare in men.
Perhaps our readers can offer some helpful feedback.
Readers?

Please go to

http://www.ichelp.com/

and

http://www.ic-network.com/iclifestyles/

for more info.

[quote] I have never met another man yet with IC symptoms, but i have had them for a year and a half and find it almost impossible to cope with. I have even been to some of the best doctors on the east coast... [/quote]

[Guest]

I am a 28 year old male and suffer from IC aswell. It has taken me 6 years to finally get them to consider IC as a possibility. My symptoms are a constant frequency to void, up to 30 times a day. I have no pain involved just the urgency. I on average void 75ml a time. I am awaiting a hydro dilation and an instillation of heparin. I too had no luck with ditropan or elmiron. Hang in there, it could be worse.... you might be in the australian public health system and have to wait 3-4months for every procedure and 5 weeks just to see the Urologist.
[quote] I have never met another man yet with IC symptoms, but i have had them for a year and a half and find it almost impossible to cope with. I have even been to some of the best doctors on the east coast... [/quote]

[Guest]

There are other men with IC over on the message boards at Ic-network.com

[quote] I have never met another man yet with IC symptoms, but i have had them for a year and a half and find it almost impossible to cope with. I have even been to some of the best doctors on the east coast... [/quote]

[shaundog1978]

Hey bro, I too am a 29 years old male with comfirmed Interstitial Cystitis. WHAT A TRIP! Anyways, Ive also had 2 cystos in my liftime.The first time I was 24 years old and they told me I had chronic cystitis. Back then my symptoms were just frequent urinating with mild burning.Thought I had a burner! STD! My symptoms went away shortly after getting my first cysto. From 24 to 29 I thought i just had a overactive bladder with a jacked up bladder. About 3/01/07 the symptoms started to get worse. I was taking like 20 pisses a day on the jobsite in just a period of 8 hours! From there it just got worse. I had to quit my job at the mid way point of april 2007 because I could barley manage to get 10 drops of urine out of me,while standing above the urinal for 10 minutes. Im union plumber 3rd year apprentice and I felt that I was wasting thier time. So I go to see the urologist again for the first time since I was 24 and he turns out to be a total quack right! Finally I found a better urologist and they put me asleep for my second cysto with biopsy about a month and a half ago.Diagnosis: Male ICD/Prostatodynia,urethral stenosis. Basically IC. Iv'e been taking the ELMIRON,ELAVIL,HYDROXYZINE cocktail for like 2 months plus now And im still f***** up. Plus Im on my third week of ELMIRON injections through catheder. Those are fun! Still f***** up. As far as medicine for pain and anxiety I take up to 5 norcos a day and like 3 to 4 segments of Zanex. Still no relief. The zanax definataly helps me stay calm and relaxed When Im having a real "bad day". Thier is no pain medicine that i have found yet that can take the constant burnin, stabbing, unable to empty my bladder feeling. It has changed my life so much that somtimes I prey to god and ask that I dont wake up the next mourning if you know what I mean.I went from making really good money and almost finishing up my 5 year schooling to disability and not even being able to even leave my house! Its so bad now that the only way I can piss anymore is in the shower with hot water. No more surfing, partying with friends, and even finding a girlfriend! My life sucks now and I just wanted to let you know that your not the only 29 year old male out there dealing with this f***** up disease! I quit drinking beer about 3 months ago and now Im trying to quit smoking which is not so easy. Major lifestyle changes that I'm really not able to give up so easy being so young and all. Just keep fighting and keep to a nutritional diet and I think this will go away for both of us.Were still young and have good times ahead,I hope! If you want to talk about it you can email at [moderator note: e-mail address has been removed] and I would appreciate it if you would because I would like to ask you some questions. Or if thiers anyone out there who has some good advice for me that is welcome too. Thanx 4 listening.

[UroDoc]

Hey bro, I too am a 29 years old male with comfirmed Interstitial Cystitis. WHAT A TRIP! Anyways, Ive also had 2 cystos in my liftime.The first time I was 24 years old and they told me I had chronic cystitis. Back then my symptoms were just frequent urinating with mild burning.Thought I had a burner! STD! My symptoms went away shortly after getting my first cysto. From 24 to 29 I thought i just had a overactive bladder with a jacked up bladder. About 3/01/07 the symptoms started to get worse. I was taking like 20 pisses a day on the jobsite in just a period of 8 hours! From there it just got worse. I had to quit my job at the mid way point of april 2007 because I could barley manage to get 10 drops of urine out of me,while standing above the urinal for 10 minutes. Im union plumber 3rd year apprentice and I felt that I was wasting thier time. So I go to see the urologist again for the first time since I was 24 and he turns out to be a total quack right! Finally I found a better urologist and they put me asleep for my second cysto with biopsy about a month and a half ago.Diagnosis: Male ICD/Prostatodynia,urethral stenosis. Basically IC. Iv'e been taking the ELMIRON,ELAVIL,HYDROXYZINE cocktail for like 2 months plus now And im still f***** up. Plus Im on my third week of ELMIRON injections through catheder. Those are fun! Still f***** up. As far as medicine for pain and anxiety I take up to 5 norcos a day and like 3 to 4 segments of Zanex. Still no relief. The zanax definataly helps me stay calm and relaxed When Im having a real "bad day". Thier is no pain medicine that i have found yet that can take the constant burnin, stabbing, unable to empty my bladder feeling. It has changed my life so much that somtimes I prey to god and ask that I dont wake up the next mourning if you know what I mean.I went from making really good money and almost finishing up my 5 year schooling to disability and not even being able to even leave my house! Its so bad now that the only way I can piss anymore is in the shower with hot water. No more surfing, partying with friends, and even finding a girlfriend! My life sucks now and I just wanted to let you know that your not the only 29 year old male out there dealing with this f***** up disease! I quit drinking beer about 3 months ago and now Im trying to quit smoking which is not so easy. Major lifestyle changes that I'm really not able to give up so easy being so young and all. Just keep fighting and keep to a nutritional diet and I think this will go away for both of us.Were still young and have good times ahead,I hope! If you want to talk about it you can email at [moderator note: e-mail address has been removed] and I would appreciate it if you would because I would like to ask you some questions. Or if thiers anyone out there who has some good advice for me that is welcome too. Thanx 4 listening.


Sorry to hear that your IC is that bad. If the traditional therapies are not working (sounds like you are receiving the right ones)
you might want to consider Interstim. It is designed to decrease the urgency and frequency but often helps with the pain. By the way I am sure your symptoms are frustrating but please try to refrain from using expletives to describe your problem in this forum. Smoking is a bladder irritant so quiting should help, also check out the IC diet http://www.urologychannel.com/interstitialcystitis/treatment.shtml which may help. Good luck.

[shaundog1978]

Ya sorry for the exploits folks, i'm just telling you all how it. Thanks for your advise and mabey you can tell me how to edit my post so I can clean it up. My pain doctor told me about the interstim device but I have to finish 4 more Elmiron injections befour I can take that step. Attention Web Master, can you erase my first 2 posts? I cant figure it out. Thanks

[acapa]

50 year old male checking in here. Before 2 days ago, I thought I had prostrate cancer but cystoscopy proved IC. Now I am not sure what is worse. The pain has been getting increasingly worse, I have had it for over a year. It sometimes got so bad I made trips to the emergency ward. The more i am reading here the more depressed i am getting with the thought of long term pain management.

[Jrobbins]

All,

I know this response is a little late to the original post, but I just joined the group. And this may sound selfish, but I am I glad to see I'm not the only one going thru this. I'm 36 and I was finally diagnosed with IC about six years ago, after countless mis-dianoses of Prostititus, UTI, etc..

After six years, I have figured out one thing that makes a difference. Diet and lifestyle, your main intake needs to become Water, Water and more Water... The first few weeks are hell; No Caffiene, No Tobacco-Period (chewed Red Man for ten years) I know the feeling, No Citrus, No Alcohol, No Fruits High In Acidity, Nothing that contains tomatoes or tomato paste... That pretty much leaves: Milk, Water, Meat, Fish, Pork, Vegetables, and Bread.

I struggle with this diet, it is a lot to ask. But the benefits are worth it, I still have flare ups when I fall off the wagon. IE Pizza and Beer, but those are the days that I realize just how important it is to stick to this diet (when you do decide to have the occasional Beer / Pizza try taking a couple PreLief before hand). The reality is, we are all stuck with this stupid disease. If you you want to lead a somewhat normal life, your gonna have to take it seriously. It's painful in every way imaginable, if someone would have told me ten years ago that I would have to piss twenty times a day, or that it would feel like I was blowing razor blades every time I ejaculate. I would have told them they were crazy. After four years of IC, It's reality.

Try the diet, and stick with it. It will slowly but surely get better,

Best Regards,

Justin