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Hi my name is Bre I'm 32 and and have one little boy. My story began last year when I started having severe UTI's. Very painful ones and ones that wouldn't go away. Or if they did go away they went away it was for a week or 2. Around June of last year I got one so severe that I my doctors tried 4 different antibiotics and it stayed, so after a month and half my gyno sent me to a urologist. By then I was in such severe pain that I compared it too giving birth except at least with birth doctors are nice enough to give you medication. I was told to take Motrin (although I was already taking way over the maxium amt. of Ibuprofen) and to come back in 3 days for a cystoscopy b/c they expected IC. The next I called the office crying and screaming in pain and was brought in 2 days earlier. I was given a CT without contrast which showed nothing, then my cysto was done. Lining of my bladder was perfect, no polyps or tumors were seen. The urologist decided at the time though to put me on Emilron even though there was no diagnosis. He said to stay out for 4 mths and let my bladder re-set itself. The medication got to be too expensive and wasn't helping b/c I continued to have UTI's so I quit using it after about 2 months. Fast forward to this year I've done pretty well I've only had about 3 UTI's. Last Monday I woke up b/c I urinated all in my bed (so embarrassing) and after going to the bathroom and peeing more and cleaning myself up and changing sheets I was in extreme pain. This time it started in my left kidney. My husband begged for me to let him take him to the er but I wouldn't. I ended up going to work for only 3 hrs. b/c I was in such severe pain that I ended up going to the er....I was diagnosed with a uti and sent home with Cipro. Continued with extreme pain and went to see my gyno on Wednesday who said I had a full blown kidney infection and thought I had a stone. Was sent for CT but again was done without contrast so of course nothing was seen (the radiologist then fussed at the dr for not doing it with contrast). Called my gyno Thursday am to explain I was in extreme pain and vomiting. She then said to control my pain and vomiting she wanted to put me in the hospital. But wanted me to see my PCP first. So off I go too him. He then states she had spoke to my urologist (who by the way after the way he treated me especially brushing off my pain I hate and will never go back) says that my symptoms aren't urology related. My PCP does a urinalysis tons of blood in my urine and nitrates off the chart. Sign of full blown kidney infection he also suspects stone. So he sends me for ultrasound. I haven't heard back from it yet though. My gyno calls me back Friday and says my urine culture was negative and it's a flare up of my IC (this is where I get confused) and called in a refill for my Emilron b/c he wants me to start taking it again. I don't understand if I don't have IC according to the urologist why am I being told I do? Why am I being told to take that medication? Wouldn't I have constant flare-ups without being on the medicine or diet restriction? I need help. I am considering a 2nd opinion. I'm so depressed and frustrated. I am tired of getting UTI's and being in so much pain that I can't work. I do have constant lower back pain which I've read that can be a symptom of IC. Does anyone have some advice for someone that is beyond ready to give up?
Try to give referrals from IC patients in your area. Do, above all, seek as much professional advice as you can. It does take time for virtually all treatments. If you can find a doctor that will give you short term pain meds and sedatives, use them. I am terrified of narcotics. There are so many accidental overdoses, especially when mixed with other drugs. I am in remission, and haven't taken more than a couple of weeks worth of pain meds since I was diagnosed over about 6 years ago. I couldn't take Elmiron, orally. That was the beginning of instills. I finally found the root cause. I think. If you read all the treatments that are available, and discuss them with a good urologist, it will give you hope. That is what you need now. And the support of family and friends....
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