My journey has been anything but easy but it is livable so I can not complain. I began to notice changes happening in my body 5 years ago. My already anemic body was getting worse and there was constant bleeding in my urine! I spent many nights in the ER through the years, endless doctor visits and I was getting no answers!
I was misdiagnosed every time I would end up in the ER. First they said it was Kidney Stones and to drink lots of water, cranberry juice and gave me strong pain medication! This happened several times through the years! Then there was the endless “severe UTI” diagnosis and that was happening more often than I would like. I spent months on antibiotics but my Urologist was still confused about why these symptoms would keep coming back… needless to say I was beginning to feel defeated!
Every 2-3 weeks I was having these symptoms coming back, doctor appointments ever 2-4 weeks and I was working along with the responsibilities of being a wife and mother! My dark circles under my eyes were beginning to look bad and I was feeling sick and having bad pain in my pelvic area! Work was becoming something I no longer could enjoy because I was in so much physical pain and I knew something was very wrong!
After 1 surgery, 2 cystoscophies and 3 years of confusing doctor appointments I got a referral to Baylor Scott and White hospital where I met the doctor who would FINALLY give me an answer!! I was recently diagnosed with Interstitial Cystitis also known as PBS. Interstitial Cystitis is a Bladder Syndrome that doesn’t have a cure so needless to say I was very upset by the news I had just received!
Interstitial Cystisis facts
- Symptoms include bladder/pelvic pain and pressure. Burning in bladder, fever, ulcers, frequent urination and blood in urine ( typically not visible)
- Often mistaken for UTI
- Symptoms can be mild-severe and chronic.
IC requires a Medical Diagnosis by Cystoscopy, lab testing and imaging. Once diagnosed you will learn about Treatment options including
- Bladder injections
- Physical therapy and surgery
In the US and Europe an estimated 0.5% of people are affected by this syndrome and women are diagnosed 5x more than men.
– Kasey Gruenewald