Confused!!

[jodilam]

Hi everybody.

I have recently been diagnosed with IC (by symptoms only) and was put on Elmiron. My doctor told me to go on this site and research which I did (great site learned a lot). It hit home right away and I thought thank god finally an answer. I started tracking my flare-ups and watching my diet. What I found was that my flare-ups are every 20-25 days apart and last 2-4 days. Sounds like a period right. Six months ago I had a procedure called Hydro thermal abalation where they basically distroy your walls so you don't get a period (I have had to have blood transfusions cuz I lose to much blood) so I don't get my period anymore or so I thought. My pain is so intense that I just want to die, lower back and right above the pelvic bone. This last one lasted 4 days, and I basically couldn't function, when the pain finally subsided guess what? I started bleeding. I go to my GYN this afternoon who thinks the surgery reversed itself. I wonder now or am I just in denial do I really have IC or is it related to female problems. Everything I have read leads to IC except that the flare-ups are pretty predictable time wise. Anybody heard of this or have any ideas cuz I am afraid that I will be bounced back and forth between doctors again. Thanks!

Jolene

[ICNDonna]

Have you seen a urologist? If not, I think it would be a good idea. You might ask for a potassium sensitivity test to confirm the diagnosis if you are having doubts. Some doctors feel hydrodistention with biopsies is a more accurate diagnosis, but others feel the PST is just as accurate.

That said, it's not unusual for an ICer's symptoms to fluctuate with hormonal changes. Some have greater problems around their period, others have an easing of symptoms at that time.

Donna

[jodilam]

Donna,

My urologist is the one that diagnosed IC by the symptoms and by checking the sensitivity of my urethra. She said the symptoms all match up and my urethra was painful to the touch so there was no need to test. I think somebody needs to think of a new word for this "pain" the word pain is not harsh enough. The last four days have been hell I didn't know anything could hurt so bad. I doubled up on darvocet and that didn't begin to touch it.
Jolene

[emilyrose197377]

Hope you feel better soon, most urologist test for ic by doing hydro and cysto or the newest potassuim senstitivity test good luck.

[hglsbabe]

Buy a bottle of Dasani Water that has enough Potassium to cause you major pain if you have IC. If you don't have it you won't feel a thing. Plus you don't have to pay someone to torture you.

[ICNDonna]

Potassium ingested is not the same as putting potassium directly into your bladder. Dasani does have some additives that make it unpleasant for me to drink so I stick to plain spring water when I'm away from home. We have a deep well with an ultraviolet filter at home so I drink water from the tap.

I think of potassium the same way I think of salt. If I rub salt into a scratch, it burns! --- but if I put that same salt on an egg and eat the egg, it isn't going to hurt. If potassium is put directly into my bladder, it will hurt! --- but I know that if I don't get an adequate amount of potassium in my diet, the consequences can be very serious. I have to take a potassium supplement after pre-surgery blood tests diagnosed a deficiency. I was given IV potassium before I could have the surgery without significant risk.

Donna

[Ginny]

Were you tested for Endometeosis (sp)?

Ginny

[emilyrose197377]

Hgl is right I drank some water that had pottassuim in it and I didn't know it at the time I had a flare with it.