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 20 Year old male, Diagnosed with IC for 7 years.

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joseph_abney34



Posts : 23
Join date : 2016-01-31

PostSubject: 20 Year old male, Diagnosed with IC for 7 years.   Thu Feb 11, 2016 12:06 am

I am a 20 year old male with IC, diagnosed by a urologist when I was 13. Symptoms have stayed relatively consistent. They include not feeling relieved after urination, occasional frequency, occasional urethral urges, constant numb feeling (I feel my bladder 24/7 even when its not full), low bladder capacity, low bladder compliance and pelvic pressure. I get urethral discomfort often after sexual activity. Most of the time though I urinate 7-10 times a day. I have tried elmiron, amitriptyline, vesicare, botox treatment, as well as "natural" therapies. None have been effective thus far. IC has drastically affected my quality of life. It is the predominant thing I think about 24/7. Even though I do not have severe pain like many IC patients do, I feel like a young guy trapped with an 80 year old bladder that barely works. The IC diet generally has not affected my symptoms. I can eat whatever and my symptoms are consistent and stay the same. I am extremely excited about the research you all are doing and our community can not thank you enough for looking into this disease. Smile
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Strandsidemol



Posts : 64
Join date : 2016-02-15
Age : 39
Location : Leicestershire,uk

PostSubject: Re: 20 Year old male, Diagnosed with IC for 7 years.   Tue Apr 05, 2016 2:02 am

Hey joseph, how are you doing?
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dantheman



Posts : 130
Join date : 2016-04-04
Location : Adelaide

PostSubject: Re: 20 Year old male, Diagnosed with IC for 7 years.   Thu Apr 07, 2016 9:03 am

Hi Joseph, how long were you on Elmiron for?
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IC Queen



Posts : 42
Join date : 2016-04-13

PostSubject: Re: 20 Year old male, Diagnosed with IC for 7 years.   Sun Apr 17, 2016 4:21 am

It makes me so sad to read your story, because I know it so well. I am pulling for you and these researchers. Hang in there, you can do it, things will get better....as my mom would have said. I actually remember saying to her when I was 20, "I feel like I am 80."
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dantheman



Posts : 130
Join date : 2016-04-04
Location : Adelaide

PostSubject: Re: 20 Year old male, Diagnosed with IC for 7 years.   Sun Apr 17, 2016 7:33 am

Hey joseph i had botox the other day. Pretty risky procedure as you know. Do you know what they were going the out come was going to be. Was the botox put into the bladder or bladder neck
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IC Queen



Posts : 42
Join date : 2016-04-13

PostSubject: Re: 20 Year old male, Diagnosed with IC for 7 years.   Sun Apr 17, 2016 11:28 am

Actually things are WAY better than when I first got the disease. The Internet was 20 years in the future, long distance was very expensive, and typing a simple letter was awful. You had to correct your errors with white out. And I had the disease for 15 years until I was able to speak to another person with the disease. I actually thought I was the only person in the world who suffered that way for all that time. My mom told me that I wasn't THAT special and I would meet many others who hurt like I did/do. We all have Dr. Vicki Ratner for getting us together and the first IC research in the US going.
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joseph_abney34



Posts : 23
Join date : 2016-01-31

PostSubject: Re: 20 Year old male, Diagnosed with IC for 7 years.   Thu Apr 28, 2016 12:59 pm

Hey guys, sorry I haven't been responding to this forum. To answer Strandsidemol's question, I am more or less the same since I have been diagnosed. My symptoms are ever present however the severity of my pressure and frequency wax and wayne depending on stress levels and fluid intake. I have had this disease for 7 years so I guess you could say I am doing decent. Still decent for us is hell on earth for others.

Dan I was on Elmiron for I believe 7 or 8 months. It was supposed to start helping at least at 6 months so several years ago when it didn't the doctor told me I didn't have to keep taking it. Now that the study came out that touts that Elmiron is not as effective as previously though, I am not surprised it didn't work for me.

IC queen thank you for your encouragement, it is very comforting.

Also Dan the botox was supposed to relax my bladder and allow me to hold urine longer and not go to the bathroom 15 times a day. Well it didn't work and it made it worse for like a month or two. Well this was 5 years ago so the botox wore off long ago, but still it never really helped me. I really do not know exactly where the botox was administered to tell you the truth. I just know the Urologist that did the procedure was grossly incompetent because he barely even explained how the procedure would help me, he often pushed pills that he had samples of so I know he was profiteering off of pushing certain pills. Not to mention after the procedure was done I had bleeding in the urethra more so than usual because recently I had a cystoscope done by a great urologist in Cincinnati and after the procedure was over I had no blood.

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IC Queen



Posts : 42
Join date : 2016-04-13

PostSubject: Re: 20 Year old male, Diagnosed with IC for 7 years.   Thu May 05, 2016 8:15 pm

Joseph...I just want you to know I am sending good thoughts out into the wind to you. You should be enjoying your youth and not dealing with something actually worse than anything I have ever had. Now that I am older, I have had other things and nothing comes within earshot of IC. If it makes any difference, you may just find anything else people consider difficult pretty easy in life. People were amazed how easily I went through a divorce, came back to work after a root canal, and some things that made people fall apart. When my mom hit 85 and had a bit of pain, she just went nuts, with what wouldn't bother people with IC. She wouldn't even let me pluck the hairs older people get because it HURT! Sometimes I sit and pluck my legs instead of shaving and not when I am taking pain killers. Gets my mind off the bladder pain! Remember lots of researchers are dedicated to this. I learned that when I went to 2-3 day NIH IC research meetings. Some of the researchers seemed so brilliant it boggled my mind. Surely they can find some better treatments (aka band aids to me), if not a cure. So you hang in there and think about going to sleep with low key music you like. For some reason my bladder felt better when I watched Titanic. After way too many viewings, I finally figured out it was the music that made me feel better and bought the soundtrack. Seems like I read someone watched the movie Rocky a lot. Maybe the soundtrack would work with that? Can't hurt like other things we try.
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20 Year old male, Diagnosed with IC for 7 years.
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