• Posted by starflower31
  • 19 Jun 2010

So here’s my story-I found out I had interstitial cystitis in February of this year. How mine started was from a uti (Urinary Tract Infection). I had symptoms,went to the doctor and they told me I had a uti with the bacteria ecoli. So I took my antibiotics,but my symptoms didn’t go away. I returned to the doctor. They again told me I still had the uti with ecoli bacteria, so they gave me a stronger antibiotic. I got better this time and my symptoms went away, but not for long. Two weeks later I started to get my symptoms back again. I have burning, pressure, and frequent urination. I felt better when I would drink a lot of water, then as my bladder filled up, I would have to pee and start the pain all over again. I went to the doctor again. This time they said I had white blood cells in my urine but no bacteria growth.They then said that I needed to see a urologist. That’s what I did. I went to my urologist a couple of times telling him my symptoms were so bad and that something had to be wrong! He then scheduled me for a cystoscopy.That’s where they go in through your urethra with a scope and look at your bladder. I had that done with anesthesia. When I woke up my doctor told me that he only saw inflammation and that it could just be from my hormones. He sent me home on Macrobid. That only helped for maybe one month,¬† then again my symptoms came back. I called my Urologist again and told them that I was not getting any better, and I pretty much asked if he could do a cystogram and stretch my bladder and put dmso into it. So he scheduled me for the cystogram, I had that done, and this time when I woke up he had pictures for me to look at. He explained to me that I have a chronic bladder disease and that there is no cure. I felt like i was gonna pass out! He then¬†showed me the bleeding spots on my bladder, and one ulcer. The dmso helped me feel better for about 2 months. I then had to change to a different urologist because my insurance changed. The new Urologist started me on Elmiron. I felt better,but after 3 weeks of taking Elmiron, I started to not be able to swallow very good. I had to stop the Elmiron because it was making the glands in my throat swell up. Next, I started to get dmso treatments once a week for 6 weeks. That was a nightmare! A nurse would just come in and put the straight catheter in and pour the solution in. That hurt bad! I had to hold it in for at least an hour. It was nearly impossible to do because I was burning so bad from where the catheter went in. I would go home and soak in the bath water, drink baking soda water, and keep an ice pack down there all day. Towards night I would start feeling better. The treatments did help me, but I was told they should of numbed the area around my urethra before they started my treatment. Also that they should of used a pediatric catheter .So next I’m to see my Urologist in 4 weeks and probably schedule me for another cystogram to see if my bladder got any better. After that I don’t know what awaits me and it’s scary thinking about it, but I have lots of ic friends to talk to. That helps knowing people who are going through what you are, and that you aren’t alone. So that’s my story.

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