Waking up to an eternal UTI like feeling.
In Sept of 1994 I woke up with a burning urethra and lower bladder pain. For the next several months I was on several antibiotics and had numerous tests done. In January of 1995 after a cystogram that showed Hunners Ulcers I finally had an answer. Being only 16 I was naive and thought wonderful they know what's wrong now I can get better, but that didn't happen. I soon learned that there was very limited treatment. Elmiron was outside of my affordability at 700$ a month and after 4 months of no improvement I quit taking it. So I started seeking natural supplements. I began a daily regimen of aloe cornsilk and echinea. Unfortunately these did not do as much as I hoped. As years went on and I went to multiple doctors I was fairly convinced by them that I was just depressed and the IC was a manifestation of depression. I began a decade of trying different anti depressants. None worked and in fact most made me feel significantly worse. I went to therapists. I went to Urologists. I went to regular doctors. They sent me off for tests did blood work said try this try that come back if you dont improve. Except I never did and things got progressively worse. Sex became miserable. I dreaded the burn and hurt that lasted for days after. The severe stomach cramps my bladder caused. The pain that never goes away, the urine leakage. The never being able to do anything without a toliet nearby. And the amount of times I've been treated poorly by flight sttendents, nurses, doctors, teachers, friends, family employers by life in regards to my incessant need to pee is downright depressing.
Doctors who say they can't believe I pee 60-80 times in 24 hours. That dont believe me when I say I'm up 20 times at night in a 8 hour period just to pee.
Doctors who refuse to offer pain relief.
Doctors who dont listen to me.
Pain management clinics that refuse to treat IC patients.
After 21 years of constant pain and exhaustion from lack of real sleep, there are days when I just wish I could die just so I could be free of this pain. If I didn't have my kids and husband to live for I dont know how desperate I'd become to end everything. Not because I dont love life. Not because I want to die. No, only because I want to end this relentless pain.
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