Interstitial Cystitis - Anyone have it?
16 September 2003, 06:58 PM
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Just a quick question.
After 18 months of tests I have been diagnosed with Interstitial Cystitis. It is a urinary tract disease, possibly an auto-immune (think I spelled that right) condition, but research hasn't figured out its cause or cure yet.
I was wondering if anyone on the board suffers from it, or had relatives who do, and how they manage the pain? It is most common in women, though some men do have it too.
Thanks.
Foxy
After 18 months of tests I have been diagnosed with Interstitial Cystitis. It is a urinary tract disease, possibly an auto-immune (think I spelled that right) condition, but research hasn't figured out its cause or cure yet.
I was wondering if anyone on the board suffers from it, or had relatives who do, and how they manage the pain? It is most common in women, though some men do have it too.
Thanks.
Foxy
16 September 2003, 10:19 PM
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Cheers Marcus, that's the American support group, I am a member of the UK one and they are very helpful. Just thought I'd look for some other fgriends who need someone to talk to like me. 
17 September 2003, 10:42 AM
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Hi Garnet, was going to reply last night but didn't get chance.
Glad you have finally found out what is wrong and that you have found a support group to talk to. Must be a nightmare knowing that there is nothing that can be done at the moment
Fingers crossed that they find something to cure/control it in the near future. 
You can mail me if you need a moan anytime
Lisa
Glad you have finally found out what is wrong and that you have found a support group to talk to. Must be a nightmare knowing that there is nothing that can be done at the moment
Fingers crossed that they find something to cure/control it in the near future. You can mail me if you need a moan anytime Lisa
17 September 2003, 02:13 PM
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Thanks Red!
My urologist seems to be a good doctor, he's not afraid of the costs to use the newest, most expensive drugs to help me. I will be starting the first lot of treatments in December. I've also on the waiting list for councelling, pain management and a dietitian (the illness is aggrivated by a lot of food, so basically I survive on anything beige). I'm employed in the civil service now after 18 months sick leave, and they are good bosses. I am in work roughly 4 days out of five (used up my no-questions sick leave in 2 months with an operation. Whoops!) though that should improve when I get my TENS machine.
When this latest flare up finishes I plan on going back to my kick-boxing classes. It's a very good for anger management!
Hugs
Foxy
My urologist seems to be a good doctor, he's not afraid of the costs to use the newest, most expensive drugs to help me. I will be starting the first lot of treatments in December. I've also on the waiting list for councelling, pain management and a dietitian (the illness is aggrivated by a lot of food, so basically I survive on anything beige
). I'm employed in the civil service now after 18 months sick leave, and they are good bosses. I am in work roughly 4 days out of five (used up my no-questions sick leave in 2 months with an operation. Whoops!) though that should improve when I get my TENS machine.When this latest flare up finishes I plan on going back to my kick-boxing classes. It's a very good for anger management!
Hugs
Foxy