still kind of new to IC....have questions

[threethings06]

I'm still fairly new to IC (was diagnosed earlier this year). I have read a TON about it but i still have some questions. Do most people get tested for various infections even after having a cystoscopy? I was curious to know if I should be tested for strep D, or even something else. I've had regular urine cultures done but at this point those are negative. Last year I tested positive for Ureasplasma (just posted something in the "antibiotics" forum in response to another post)....then shortly after that I tested positive for a UTI. I had both treated and was retested for both because even though I finished the meds I still had pain. The retests were negative but I still had so much pain that 6 months later they did the cystoscopy on my request. The doctor said I had "very mild" signs of IC and that this would probably never bother me again. Well...about a month ago I went off the BC pill to get a period (meaning i am no longer taking it continuously to avoid period) and I got the symptoms back all over again. I have NO frequency or urgency.... just pain and some pressure (mostly just pain). Anyone have any advice about other infections? At this point I will begin to keep a food diary to see what might be causing the pain but I feel like maybe I should be ruling other things out? This is very depressing and frustrating. Any advice would be greatly appreciated.

[Trishann]

I would continue to work with your doctor and don't hesitate to tell the doctor about any pain you are having in that area. That is great you are keeping a food diary, maybe this will also give your doctor some understanding what is happening. You are doing great don't get discourage, maybe when the pain is there the doctor can give you something for relief. I don't know if this pain is from IC or what, but what is great, you continue to seek for answers. Hang in there.

Trishann

[ICNDonna]

Are you following the IC diet? If not, that would be a good starting place, to go alonw with your food diary.

Warm healing thoughts,
Donna

[threethings06]

trishann...thank you for the kind words and advice. i appreciate it. i feel like i need some moral support. my family is great but nobody really knows how this feels unless you have it. so thank you! :)

donna...i am not following the IC diet yet. the reason is because i was symptom free for so long so the doctors weren't really convinced that i actually had IC. that's why at this point i will be keeping a food diary to see what is causing my flares and then i will work in the IC diet. unfortunately food is a big part of my life. i'm very into ethnic cuisines, etc so it's been hard for me to imagine limiting myself to certain foods.

thank you all for the advice. i have more questions regarding supplements but i'll post those another time on the forum (alternative therapies or whatever one fits. hehe)

[ICLori]

Everyone has given you such great advice, just wanted to say that I think you should also just work with your doctor on this.

If being on the birth control pills helped your symptoms, maybe you could consider going back on...

Blessings, hope you feel better soon,
Lori

[threethings06]

thank you. i do plan on going back on the pill (i'm still on it...just with periods..not continuously) continuously with this new pack. i was hoping to stop using it since i've been on it for 12 years. :confused:

[threethings06]

btw...the pill i will be changing to is Low Ogestrel. I've never taken this one before. Has anyone tried it?