Hello everyone!
I have not logged on in a long time but I missed sharing with everyone so I'm back! I was diagnosed in 1993 after 3 years of wondering (along with my doctor) what was going on. Kept thinking I had a bladder infection,test would be negetive for bacteria...finally has the cystoscopy with hydro-distention and there was the answer to what I had ...it was called iterstitial cystitis.
At that time very few doctors ,nurses,hospitals or for that matter just about anyone ,knew what the heck it was! It was very frustrating and I even more devestated that after they told me what iI had ,the doctors also told me there was no known cure only treatments which may help.Heck they didn't even know what caused it!!!
Well.that was then ,this is now and my life ,although has been quite a challenge has made me a much more determined person. I have done many DSMO treatments,bladder cocktails,I learned to cath myself,I was not a good canidate for Elmeron(had Ic 4 yrs before it was available),but I manage my pain much better since I started going to a pain clinic about 4 years ago,because my urologist suggested they may be a lot more helpful in pain
management...boy was he right!
I no longer take vicoden or percoset because these drugs have a short delivery time 4-5 hrs. I wa put on Methadone 5mg,3 x a day and also I take Ativan which helps with spasms and also lets me sleep more than 3 hrs. during night . What a difference!!! I still can have flares ,and have no idea where they come from! I have been on the IC diet for many years and that also helps a lot.
One last thing I must tell everyone who has IC that I have found invaluabe is:
Take time out when you are in pain!!! Get on that couch get a heating pad and learn that this will be the quickest way to get out of a flare or just calm down the pain.
I fought this idea for years until I realized I do have a condition that will win if I push beyond where my body can go! DIscomfort is one thing I've learned to live with...but now after 14 yrs. I don't get in my own way when I really need a time-out!
Hugs to All
abbygirl
I have not logged on in a long time but I missed sharing with everyone so I'm back! I was diagnosed in 1993 after 3 years of wondering (along with my doctor) what was going on. Kept thinking I had a bladder infection,test would be negetive for bacteria...finally has the cystoscopy with hydro-distention and there was the answer to what I had ...it was called iterstitial cystitis.
At that time very few doctors ,nurses,hospitals or for that matter just about anyone ,knew what the heck it was! It was very frustrating and I even more devestated that after they told me what iI had ,the doctors also told me there was no known cure only treatments which may help.Heck they didn't even know what caused it!!!
Well.that was then ,this is now and my life ,although has been quite a challenge has made me a much more determined person. I have done many DSMO treatments,bladder cocktails,I learned to cath myself,I was not a good canidate for Elmeron(had Ic 4 yrs before it was available),but I manage my pain much better since I started going to a pain clinic about 4 years ago,because my urologist suggested they may be a lot more helpful in pain
management...boy was he right!
I no longer take vicoden or percoset because these drugs have a short delivery time 4-5 hrs. I wa put on Methadone 5mg,3 x a day and also I take Ativan which helps with spasms and also lets me sleep more than 3 hrs. during night . What a difference!!! I still can have flares ,and have no idea where they come from! I have been on the IC diet for many years and that also helps a lot.
One last thing I must tell everyone who has IC that I have found invaluabe is:
Take time out when you are in pain!!! Get on that couch get a heating pad and learn that this will be the quickest way to get out of a flare or just calm down the pain.
I fought this idea for years until I realized I do have a condition that will win if I push beyond where my body can go! DIscomfort is one thing I've learned to live with...but now after 14 yrs. I don't get in my own way when I really need a time-out!
Hugs to All
abbygirl


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