• 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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  • Posted by tuckersmimi
  • 27 Jan 2010

I had a hysterectomy about 4 yrs ago because of a cystocele. Everything went fine after my recovery time.  After a couple of yrs I started going to the bathroom a lot more, having infections, and basically was so tired i did not even want to get up of the mornings. I did not want to think about  something going wrong so i put it out of my mind until last Christmas when we made a trip to Iowa to pick up our grandson and before I got there I could not go to the bathroom. After many trips of sitting in a hot tub I finally got things to working and when I got home I made an appointment with uro, after several trips and some testing he confirmed I had ic and pfd. I had never heard of ic so I stopped on the way home to pick up a handbook which told me just about everything I wanted to know. During this month I was also diagnosed as having fibromyalgia, rheumatoid arthritis in hands, and in knees and lower back, all of this explained a lot but I was scared, mad, depressed,then back to mad again. For the next few months I could probably count on one hand the times I was out of pajamas and recliner! My heating pad and bathtub were my new best friends! I really don’t know why everything hit me at one time but it really changed my life and not for the better. The pressure and pain got continuously worse until Aug of 09 I had to have bladder support surgery again. Uro told me it was nothing that I had done he suspected it was the ic to blame, anything out of the ordinary throws my bladder into a fit so needless to say after this surgery it was  a month before I could actually go to bathroom like a normal person. Things have been fairly decent until now and the spasms and pain has started again. Uro told me at last checkup I could do no more lifting, or straining of any shape form or fashion, he said it would be the repetitious daily things that would get me into trouble so that meant no more keeping grandchildren…I cried all day.  It has been 5 months since surgery and if I am on my feet all day long I feel like everything is going south again. I am lucky in the fact I do have someone to help with the housework and my mom helps me daily.  It is so frustrating because I WANT MY LIFE BACK!  At a time when I should be enjoying myself I have to deal w/pain every day. I do worry what the future holds for me, I realize it could be a lot worse and I am thankful that I am not in as much pain as a lot of people I have talked to. I try and watch what I eat and I have found a few foods that really set things off. I have only had to have 2 instills  but I think I will probably have to start them again, I take trammadol/Tylenol 3x a day plus methocarbamol 3x a day, so far it kinda keeps things under control but I still have a lot of spasms especially at night. I really hate being so negative but I’m still kind of a newbie to all this, you see I have always been a take control, get things done person…and that is not happening anymore.

 
  • Posted by sunmayden518
  • 27 Jan 2010

this is a great site. i love all the color. i have my story at www.sunloversspot.com if anyone is interested

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