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K9wife

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   Although I have been diagnosed with IC since age 19, and am now 46, I have never been actively involved in any support groups,etc., and  was very excited when I stumbled across this one in the wee hours of the night during an acute flare, in near desperation. I am more and more convinced that I need to start a local support group in my county, and am wondering if any of you had ever been part of a live group as well, and if so- any ideas or suggestions? We live in a very rural area, but my work in a doctor's office makes me constantly aware of the need for more recognition of IC myth vs fact, and basic support of sufferers. Also, within my job, I am fortunate to have access to the "latest" medical information, but ironically it is usually written by folks who have no idea what the pain and discomfort really is like!  I have gone the tour, as many of you, with  hydrostatic dilatations, cotton-mouth medicines, patches, herbals....you name it. Although I have a very understanding husband of 28 years and 2 grown daughters, none of them fully understands what I'm feeling, and I am very relieved to read some of your stories and see that I am NOT alone in this fight!     Now, it's back to the fight for some much needed sleep....between trips to the bathroom.    Thanks so much for listening, and just for being here!
DawnCOB

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Originally Posted by K9wife
   Although I have been diagnosed with IC since age 19, and am now 46, I have never been actively involved in any support groups,etc., and  was very excited when I stumbled across this one in the wee hours of the night during an acute flare, in near desperation. I am more and more convinced that I need to start a local support group in my county, and am wondering if any of you had ever been part of a live group as well, and if so- any ideas or suggestions? We live in a very rural area, but my work in a doctor's office makes me constantly aware of the need for more recognition of IC myth vs fact, and basic support of sufferers. Also, within my job, I am fortunate to have access to the "latest" medical information, but ironically it is usually written by folks who have no idea what the pain and discomfort really is like!  I have gone the tour, as many of you, with  hydrostatic dilatations, cotton-mouth medicines, patches, herbals....you name it. Although I have a very understanding husband of 28 years and 2 grown daughters, none of them fully understands what I'm feeling, and I am very relieved to read some of your stories and see that I am NOT alone in this fight!     Now, it's back to the fight for some much needed sleep....between trips to the bathroom.    Thanks so much for listening, and just for being here!

 

Hello Beth,

 

Welcome to the board.  This board is based in the UK , its great you want to be involved in a support group , if you look a the following sites in USA hopefully they will help you to see

 

what is available stateside.

 

 

 

best wishes

Dawn

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