Not sure...

[Jinny Jean]

Hey guys, so I am a bit confused... and not really complaining I suppose... but just curious if maby I dont really have IC..... im not sure, (had a cytoscopy that was normal minus the hydro) so never really "officially" diagnosed.... gah this is all so confusing for all of us. I went to the PT specialist today and she tested to see how my muscles up inside were doing. Turns out everything is normal down there and I have "good pelvic floor muscles" that arent to tight or loose. Anyways, she works with ALOT of IC patients and knows more than (get this) ANY dr I have been to as of yet about IC. Jeeze. She was worth every penny of the 90 dollars I spent today for the appt. About time Id say..

Anyways I explained to her my whole situation, how this all started (suddenly after a yeast infection and a ton of antibiotics, which CAUSED the yeast infection) anyways after listening to all my symptoms etc. she wasnt convinced that what is going on is IC. I know that some peple can have IC with no pain, ( I have no pain and never have)... but she was leaning more to a bladder sensitivity to estrogen and bladder irritants (like coffee) rather than having a damaged bladder lining. She said that 99.9 percent of IC patients she deals with have messed up pelvic floor muscles and PAIN.. neither which I have, by the grace by god. In her opinion the bladder is affected most by estrogen, and when trauma happends to the body, the bladder can be the whipping post so to speak. I have only been on Elmiron for 1 month, and off my BC pills for 2 months... which have made all the difference in the world...She figures that b/c of the nasty antibiotics and infection etc, my body could have become extremely sensitive to things like estrogen (hence why I had to go off my pill) but that sometimes it can bounce back, it just takes A LONG TIME to regulate again. I have been symptom free entirley for the last 3 weeks (just avoiding things like coffee, oranges etc)...Im hopeful that this could just be something that over time dissapears (kind of like people who have bladder sensitivity after a bladder infection)....Any thoughts?

[Linda May]

It's possible you do not have IC and I hope you don't, but if you want to know for sure you need to have the hydro/cysto done in the hospital.

[Amanda1106]

I hope so! I'm dealing with a similar thing...I had a resistant UTI (2 positive cultures with 2 different bacteria) that took a long time to clear up...and am still left with intermittent UTI-like symptoms weeks later. I had another culture yesterday to see if the infection is finally gone. Anyway, they're trying to figure out if I have IC or residual irritation. I hope for both of us it's not IC!

[ICNDonna]

Interstitial cystitis can't usually be diagnosed by doing an office cystoscopy. It could easily be that diet changes are helping you feel better. You need to be working with a physician to determine whether or not you have IC. The diagnosis is made at least partially by ruling out other possible problems. Not all physicians diagnose by hydrodistention --- it's entirely possible to diagnose without that test.

I know that some ICers do have pelvic floor dysfunction --- I do not --- and I definitely have IC.

I encourage you to continue following the IC diet and express your concerns to your doctor.

Warm healing thoughts,
Donna

[endogirl2]

Sometimes bacterial vaginitis can cause urinary type issues - you can get a simple swab done at the gyno's office. I had this before and they said the bacteria from the BV hang out around the urethra and cause irritation. I got BV and yeast at the same time after 2 antibiotics for a bladder infection.

[Jinny Jean]

Yeah, I have been swabbed for EVERYTHING, and all normal... I DID have a yeast infection, and that is when this all started. I have had a dr look at me numerous times and the topic of IC has been brought up, but reluctantly... as we all know it is super hard to diagnose. I had one Dr tell me that in her opinion after trauma etc to the body any part can react, so the bowels, skin, nails, and bladder too, to name a few. She told me to stop all the suppliments i was using, so like salmon oil, calcium, etc and leave my body alone, since it was what I had PUT IN my body that had screwed it up in the first place, I didnt need any more junk (even if it was good junk)....lol.

I was reluctant to take her advice, but I did anyways, and as soon as I just left everything alone, I felt 100 % better (not saying this is the way to go, or works for everyone, it just worked for ME)....I never wanted to get a hydro because I know in SOME cases that it can make it worse. it might work for some and that is amazing, but I wasnt willing to take that chance, even if it meant a "concrete diagnosis"...( I was already tentativley diagnosed anyways just by symptoms) I know the diet has helped alot, but now I am currently eating anything and everything (with the exception of coffee, tea, tomatoes and chocolate) with no problems at all.... BAH. I have no idea. Just praying this isnt IC and a blip on the radar of life

[flowerangela]

im hoping mine is just residual irritation from my antibiotic resistant utis and yeast infections from antibiotics as well. i have been having some very good days lately thanks to acupuncture and herbs.. significant pain relief. im thinking my body is naturally ridding itself of whatever infection was left over from the last horrible uti. hope this is your case as well.

[Jinny Jean]

I hope so too! Some days I really do think it will all just gradually go away, and other in not sure, but the good month and weeks in a row sure help with hope. This last weekend has been a bit iffy, but im getting my period, and everything is so much more sensitive anyway then... gonna try eliminating sugar again too, that seemed to help in the beginning!