Thread: Urinary pain since May, not IC or OAB

I'm an otherwise healthy 20-year-old female. Aside from this irregular periods have been my biggest health concern.

I got UTI's frequently when i was toddler. When I reached puberty they began again. I usually didn't go to the doctor to treat them: my mother and grandmother always implied that it was my fault. (I actually diagnosed myself as suffering from "cystitis" after the first year with an old med book.) Generally, they went away after a day, occasionally I'd pass blood. When I was about 14 my friends mother (who was also a chronic sufferer) gave me Uristat (a UT analgesic) and gave me few pointers.

They've increased in frequency every year. The year before last may I had one every month. Last May the pain started and it basically hasn't stopped. It hurt so bad the first week that I actually went to the emergency room. They found a incredibly minute amount of bacteria, but still gave me an antibiotic script and sent me on my way. The symptoms are as follows

*burning
*burning while urinating
*heavy bladder
*intense urgency
*intense frequency (up to squeezing out a couple of drops every five minutes or so)
*occasional "impact" sensitivity
*occasional tension on the side of lower abdomen

The Uristat is the only reason I've been able to function at all but apparently you're not meant to take it more than for a few days. In the first months (the worst of this) there were times when I was eating almost a whole box in a 24 hour period and I couldn't sleep for more than an hour or two.

Around July the pain reached its height and i started having bladder spasms. It felt like it was wrenching itself and yanking my tender urethra up. I also started experiencing vaginal pain, inside and outside, that was worse when the urinary pain was worse.

Through the summer and fall I saw doctors. The pain has been on the decline since summer. Blood and ultrasounds came back normal but my urine consistently shows blood. We tried a few medicines (Elavil and Sanctura) but they seem to didn't work.

I had a cystoscopy in early fall. Before the operation we were pretty sure I had IC but they said that my bladder has a huge capacity and coupled with a few other things they ruled out IC and OAB. But, the doctor did say the lining of my bladder was inflamed and the spots he saw came back as concentrated spots of inflammation. He suggested physical therapy or perhaps trying more medicines but he strongly implied that they probably wouldn't work because they'd be different types of the same meds I'd tried, and that was the end of it. To me it would seems that if my bladder is inflamed something is irritating it. Meh.

Since about summer I've been passing blood visibly occasionally but nearly every day there are all of these white bits of something. Sometimes they're tiny little flecks and others they're the size of dimes. They're sort of gooey and look like feather down. Honestly, they look like tissue to me. From time to time i still pee blood. I have to take the Uristat about five days a week now, only about one of the days requiring doses all day. Its better but I'm still miserable.

Oh, and about two months something else started happening: sex burns. =( Its been impossible to get my fiance to touch me ever since i got sick. I like sex often and we had a very satisfying FREQUENT sex life before all of this. Even when I was back in the time of the worst pain if I was in the mood I could get wet and have sex (if he could be begged into it.) So, now that the pain has somewhat subsided I play down the pain a lot. I know it sounds dumb but i really miss being intimate, not to mention being generally sexually frustrated. I've never had a problem lubricating or reaching orgasm EVER and in fact i often times "gush" when I come, but i can't get wet and it feels like I'm extra tight. I swell at the opening for a day or two afterward.

I've tried everything: changing my diet, abstaining from sex, avoiding caffeine, spicy foods, acidic foods, sulphuric foods, drinking LOTS of water... nothing is working.

I don't know....I'm at my wits end. Can anyone offer any suggestions? Thanks.

I have had cystitis, as well as ureteritis and nephritis for 15 years. It took almost 6 years and 5 or 6 doctors to FINALLY diagnose my condition correctly. I simply would not give up until I had an accurate diagnosis that was consistent with my symptoms and the test results. Mine is eosinophillic in nature. I am not suggesting that you have the same, as it is very, very rare. I am suggesting, however, that you go to another urologist in your area or call the ICA (Interstitial Cystitis Association) and ask for their recommendation. There is obviously something wrong and you need help. Just remember to "advocate yourself"; we women sometimes forget that when it comes to our own needs. Good luck and God Bless.