I'm not sure just how long I have had IC. I was diagnosed in Dec. of 2010 after a second Hydrodistention. The first one was 6 months prior. The disease had spread alot in those 6 months. Now before this I had been in and out of Doctor's offices, Specialists, Pain Management, Hospitals, and had 17 surgeries. This wasn't my first chronic pain issue. I was diagnosed with Endometriosis at the age of 16. I had surgeries to remove the Endo. a few times. I was told I didn't have much of a chance to be a Mother. I dealt with the pain of Endo. which was mostly a week a month (period time). At the age of 26 I had a wonderful surprise when I found out I was pregnant! Now this was a very painful, and hard pregnancy. I went into labor at 21 weeks. Luckily they were able to stop labor with medications. I was put on bed rest. I ended up in the hospital at least once a week some times more, in labor and getting shots to stop the labor. Fortunately I never dilated, and 2 weeks after my due date I gave birth with an emergency C-section to a very healthy baby girl. As the year after she was born my pain from the Endo. got worse and worse. I was laying on the couch with a heating pad more and more. I ended up going in and getting it removed again. It didn't help at all. I didn't know what to do. I had this wonderful baby to take care of and not being able to do much at all. After talking with my Dr. he tells me I should have a hysterectomy. The first thing I thought was but I want another baby. He told me I most likely wouldn't be able to carry another one, and that it would take all the pain away. I agreed. I needed to take care of the one I had, who needed her Mommy to be able to run around and play with her. The year and a half after my full hysterectomy I felt so good no pain, no period! I had my life back! After that year and a half I had all this pain coming back. What is going on? I went to the Dr. and had another surgery to see what was going on. No Endo. but you have massive adhesion's. That is why your in so much pain he says. It kept getting worse, and I kept having surgeries to remove them. This went on up until a year ago. In and out of Dr. after Dr. and in pain management every month to get my pain meds. They all left it at the fact that it was "just" the adhesion's. I find a Dr. that I really liked, who didn't think I just wanted the pain meds. didn't think I was making it up or it was all in my head. As I had heard over and over. She asked me on one appointment "have you seen a urologist?" No I have not. She says I think you may have Interstitial Cystitis. I go meet with him and he says yes it does sound like it. I had a hydrodistention done. When I woke up he said yes you have IC. He says this procedure should help for about 6 months. A week later I was feeling better. Still had a lot of pain, but I was able to get out of bed, and even start helping at my daughters school. Fast forward 6 months, it started getting worse and worse and I was back in bed. I called him up and went in for another hydrodistention. This time he says that my bladder is a lot worse inside. This one doesn't work very well. That was Dec. of 2010. He reminds me that there is no cure, no straight forward treatment that will fix it. Last month I went back in. I can't take having this much pain any more! He does tell me well there is another treatment we can try. It's called bladder instillation. I have to go in once a week, for 6 weeks. The put some meds. into the bladder with a catheter. The first 2 treatments don't help, the 2nd one made it worse. I had the 3rd treatment yesterday, and it has helped so much! My pain level has gone from 7-9 to a 2-3. I know that it's not a guarantee and that it won't last for ever, but I'm glad to have any hour, days, or maybe even weeks (if I'm lucky).
It has been a very difficult journey to finally finding out what was wrong with me. And it's hard to know that it's a disease that has no cure, and will get worse, but if there is something that will at least give me some very good days I'll take them.
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