Monday, April 6, 2015

My IC Story

Ok, here is my story in a bit of a nutshell. I was diagnosed with IC over 20 years ago- the urologist didn't really know what to do with me- basically after a bladder distension, he said- you have very condition called IC which there is not a lot known about- and rarely seen in someone at your young age (was 23 at the time)- still to this day don't know if this has anything to do with my diagnosis, but I did have a ton of UTI's as a kid, and had to get my urethra dilated at age 6. That doctor sent me off with Pyridium and told be to take it as needed- ha!  I actually went into somewhat of a remission for awhile, until after I had my kids. It was manageable until about age 36. I had 2 traumatic births with my son and daughter- which definitely caused prolapse with my uterus, and had a rectocele. In December of 2014, I did have a hysterectomy and rectocele repair, which did help my bladder symptoms a bit. Let's see past treatments that I have had- bladder dystension, elmiron, botox...currently I do PTNS (Post Tibial Nerve Stimulation) 1 time per month- I will post some info. about this- has helped tremendously with my frequency of 30 times per day, down to 8 times per day...and I do 1-2 rescue treatments (bladder cocktail) each month- which helps with the pain. For the last 3 months I have also added a clean eating regimen and exercise. I do feel that cutting out the sugar (for the most part- I cheat a little, has also helped a lot). I think what I have learned over the years with this chronic, very painful condition is that there is no "magic pill" no quick fix... and what helps 1 person may not help another person. However, I do think it is important for us to support each other, and share our successes and failures... because through trial and error, hopefully each of will find something that can help reduces our bladder flares/ decrease the pain, etc. Though I do still have flares on occasion, I am in a much better place with my IC than I have ever been before.

 I would love for you to comment on what has worked for you, what hasn't, etc.  I have just started a closed group on Facebook, please message me if you would like to be included. Here is my facebook link:

or email me at

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