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is there any other man out there?

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  • Kathi
    replied
    Mark - I live in Port Richey & I am going to be taking over our local support group at the Urology Health Center, is that where you go?
    Anyway, I'll let you know about our next meeting as soon as I get to talk to Dr. Perez to get it set up. Kathi

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  • joseph
    replied
    Mark,

    I was recently diagnosed with I.C. I have pain, urgency & frequency & discomfort throughout the pelvic floor. This has been going on for over 12 yrs. My hope that with medication, & watching the foods i eat things will improve.

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  • joseph
    replied
    Mark,

    I recently received a diagnosis of having I.C. I have had the condtion for over 12 yrs. Lots of pain in the rectal & bladder region & all over the pelvic area. Urgency & frequency too. I hope with medication, that there will be an improvement. How did your condition begin? Would really like to hear from you.

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  • joseph
    replied
    Mark,

    A little over a week ago, i received a confirmed diagnosis that i have I.C. It took me nearly 12 yrs. The pain, urgency & frequency really take a toll on me.

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  • toivo
    replied
    I'm a young fellow in mid 20s from Europe and was about a half year ago diagnosed with IC. I have no previous history with any urinary problems but have had kidney stones several times and think IC is in some way related to it and to my bowel problems. Everything in my life would be great if I hadn't get this damn curse. I'm sometimes really desperate and I'm about to receive IC medication quite soon, which I'm really waiting forward to it. It's just so damn difficult and slow in my country to get the treatment I want and need. I'm really afraid that my life won't ever be normal again, but I still hope that I can get better with the medication or time and to be able to keep my job and in some day be able to enjoy life again.

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  • ouch
    replied
    haven't figured out how to do this board thing yet 10 yrs of ic as a male and think I've run into less than 25 other males would like support from any ic'ers
    ouch e- add. is [email protected]

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  • kat
    replied
    Daniel, I posted a message for you under "Other Related Conditions" about Guai.

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  • diggity
    replied
    Hey, I was just diagnosed with IC two weeks ago. I guess I was kind of relieved to actually know that they had a name for this. I kind of had this feeling of urgency and needing to go all the time, since I was little, when I was little I would leave a urine bottle upstairs to have so I would not walk downstairs 5-6 times a night. In December I graduated from College, thank goodness, I had to be addmitted into the emergency room, becouse I had the worst pain ever in my life, thier conclusion , was that I had a kidneystone, that was about to pass. a couple days later I believe I did pass one, I think cause when I was peeing I thought I saw a little pepple come out, So I was better. went back to school I would sweat and just feel uncomfortable the whole class day I would constantly go to the bathroom. Luckily I did graduate from college with all my problems. A couple months ago it got worse, I I could not go to the bathroom I would have to push to urinate, and only a little would come out I could not stand it any longer, so I went to see another urologist and he said I had a small stricture blocking the urine to come out and that they would have to go in to cut it, during the surgery they talked to my wife and told her they had to stretch out my bladder, becouse it was not quite large enough to hold anything, and that my bladder was bleeding so they stretch out my bladder, that was 2 1/2 weeks ago. Now I am on Elmiron and pyridium plus, I also take some sleeping pills to help me sleep. So far I had not had any problem. everynow I get an urgency, that lasts an hour then its gone, other that that I don't feel the need to go all the time and I had not ever had the feeling before it feels great , I just hope it does not get worse I feel good I hope you guys are doing good. I am 25 years old and on my way to become a teacher I hope this does not couse a problem anymore. I drink lots of water with AloeVera juice and hydrogen peroxcide, I figure if the aloVera plant heals your outside wounds, why not the inside of the bladder, The only thing I did not experience all the time was the pain, only that one time with the kidney stone, this is my little information to you guys, I have asthma, and allergic to pine, some allergies, my asthma does not bother me all the time, I might use it twice a day. This is my story Thank you zachary

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  • D_Belvo
    replied
    Larry,
    I am sorry you are having such a bad time of it, I can relate. I used to have to sleep sitting up on the couch, to keep the pain down and the pressure off my kidneys. I went to an urologist and they did the cystospopic exam and found the IC. It felt like I had to pee all the time, and I made several trips a night to the bathroom. I had so much retention I ended up using a cath. I would say that was the turning point to getting better. Is your pain in your lower back? That is probably kidney pain if it is.
    There may be hope; I have been trying to get people to read the book,
    “ What Your Doctor May Not Tell You About Fibromyalgia.” In the book it says that the cause of fibro and IC may be the same thing and he gives the chemistry and theory. He has had a 90% success rate with fibro and IC. Here is a quote
    From the book:
    “Guaifenesen eventually clears IC complaints. Bladder symptoms initially intensify and cycle in the same way as the other symptoms of fibromyalgia. Reversal
    attacks are progressively less and less severe with each cycle until they disappear completely.”
    If you want to write my email is [email protected]
    Wishing for all Love and Health ---- Daniel

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  • Larry
    replied
    Hi folks. I'm a guy who has been fighting ic for two years. IC has changed my life. I guess that is an understatement. Used to be one of those 12 hour a day types. Those days are gone. I've been thru 2 pain clinics and 4 different doctors. I take the standard meds, including pain meds, elmiron, atarx and am even trying cystaq. I can barely work 4 hours a day, and am trying so hard to hang on to my job. The pain is 7-8 range every day. Any of you guys feel the same way? I work for a fast growing company and have an excellent position, but as I said, I can barely hang on any more. I'm trying to get used to this new life. I think about disability and not working, but this is so foreign to me. I know my life will never be the same. How do you guys deal with this?

    Lar

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  • Sandy
    replied
    Hi James
    I to have not been able to work because of IC and was refused Dissa. How did you manage. They told me I had not worked 4consecutive years out of the last six and that is why I was refused.
    [email protected]
    Regards Sandy I live just north of Toronto

    Leave a comment:


  • Sandy
    replied
    Hi d Belvo I just read your post and I am female also on Nortryptlinr(sp) I used to be on Elavil for depression and then it was changed to Nortrip because it has less anticholonogeric side effects. Dossn't cause as much retention. I am the same as you if I miss a dose of this it all comes back especially depression. I have been on Elavil so long before for depression I don't really Know when the IC hit. Just happened one night I could not pee. Would like to hear more from you if you would like to correspond
    Sandy [email protected]

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  • Murph
    replied
    There are alot more of us out there than you think. I was misdiagnosed for over 3 years as having prostatodynia. Finally, I chose a female urologist and on the first visit after hearing my symptoms she deduced that I most likely had IC which was confirmed by a cystoscopy with a hydrodistention. At that time she found that I had "classical IC" with many "hunner's ulcers". Finally, someone believed that I had real pain and I am enrolled in a pain clinic and getting good results with oxycontin and roxicodone. Hang in there, things can get better.

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  • MARK
    replied
    HEY GUYS,ITS ME MARK ,THANKS FOR THE REPLEYS,THAT HELPS QUITE A BIT.IM GOING TO A RUE DOCTOR TO HOPEFULLY DIANOSE ME FINALLY EITHER WITH FIBRO OR CFS.HAVE YOU GUYS EVER HEARD OF ANYONE HAVING MS WITH IC. I WAS READING STUFF ON MS AND IT SAID SOME OF THE SIMPTOMS IS BLADDER AND STOOL PROBLEMS.THE ONLY REASOM IM MENTIONING THIS IS BECAUSE MY MUSCLES HAVE BEEN TWICTHING ALL OVER MY BODY AND THAT IS A SIMPTOM FOR MS BUT ALSO IS A SIMPTOM FOR CFS.I GUESS I FIND OUT SOON,IM KIND OF SCARED,I HOPE ITS NOT MS.WELL THANKS FOR THE REPLEYS AND I'LL TALK SOON. MARK

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  • James
    replied
    Hi Mark- My name is James and I have had IC
    now for 2 years. I also have Fibro, TMJ, Asthma and a few other odds and ends. I have not been able to work at my job for 2 years and I am now on full time disability. I live in Canada so I guess we can say that IC knows no boundries. Mark you are not alone. God Bless you and I will be keeping you in my prayers. Try checking out the Christian sight.

    James

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