My story after 21 years

[njmom179]

It started when I was 21. I got a UTI the day after my birthday. I never went to the dr. but he prescribed antibiotics and it went away. Not long after It felt like I had another UTI, but no infection was present and no antibiotics helped. It was then discovered that I had an ovarian cyst and that was thought to be the cause of my discomfort. The cyst was removed, but the discomfort remained. At some point I had some numbness in the pelvic area and so I was referred to a neuro. The neuro thought I might have MS and that was all I needed to hear. I went into a deep depression. I finally went to an MS specialist in NYC and all the tests were negative. I tried to go on with my life. No drs had answers so ooi stopped going to drs. I got married and had two daughters. After the birth of my first my symptoms seemd to subside. And 15 years later, they are much better than the first 5-7 years. I have had some weird symptoms along the way though, and I reconsidered MS. But went for testing again about 2 years ago, and again everything was fine. I have had some tingling and numbness, strange feelings in the pelvic area that sometimes radiates to my legs, sometimes it is a burning feeling. I have had the frequency, and sometimes urgency, but I can always hold it and deal with the discomfort. My uretha sometimes feels weird, like I always have to pee, even if I just did. I also may have fibro because i think i have pressure points, and fatigue, but not all over pain all the time. Oh, I also went to a urologust about 10 years ago, and at that time, drs werent even certain IC was real. I think he was one of those drs who didnt believe in it. I went into the hospital and went under. He looked inside my bladder and nothing was found. I cant remember what he said about capacity, but i think he said it was ok. I had also gone to a urologist several years before that and in the office he put air in my bladder--i think it was air, maybe something else, to see how long i could stand it. He said after the testing i had a neuro something???. bladder. Anyway, i went on with my life, didnt think about it too much, and the symptoms waxed and waned, but mostly were not too bad. RIght now I think I may be having a flare up, so Im getting a little worried, but i know it will pass. I am thinking maybe ill go to a dr. again, but if they put me on meds or a diet, how will i even know its helping, if my symptoms come and go all the time, and i have had such a long period of remission??? In ten years, it doesnt seem like there has been that much advancement in helping patients with IC. Just wanted to know if you all out there think this sounds like IC. And maybe some advice.

I also wanted you to know that remissions are real., and I really was scared when i first heard i might have ic, but after the MS scare, its not so bad. Also, It has not stopped me from doing anything !!!!


Thanks.

[njmom179]

I am 42 now!!! Its been 21 years!!! Im ok!!