I’m 18, a senior in high school, and was diagnosed with IC only a couple of weeks ago. For as long as I can remember I’ve felt uncomfortable going to the bathroom, if that’s the right word. Whenever I would void I felt like I wasn’t done, but it was something I got used to and didn’t think much of.
About 6 months ago I woke up one morning around 4 AM with what I knew was a pretty bad UTI. That was my 5th or 6th UTI over the past couple of years so I knew right away what it was and I went to my doctor the next morning. She gave me medication for the UTI but wanted to send me to a urologist, because she didn’t think it was normal I was having recurring UTI’s so young. Also, she knew I had a urinary reflux operation when I was 6 months old and thought that it might be related to that. I had abdominal and urinary ultrasounds scheduled and the results were being sent to my new urologist.
A few days before I had the ultrasounds, my boyfriend’s mom sent me to a friend of her’s who is a “spiritual healer”. The first thing the woman said when I got there was that when she was “tuning into me” before I got there, all she saw was a girl standing up with her hands crossed over her pelvic region.
Both ultrasounds came back saying everything was normal, and after meeting with my urologist for the first time, she wanted me to have the test for urinary reflux. I went to a hospital to have the test done and after about 20 minutes of filling my bladder, and then having me void on the table (extremely embarrassing for an 18 year old, or anyone for that matter) the doctor told me that everything looked normal and he would have the results in about 24 hours but he didn’t think anything was wrong. I left the hospital in tears. Most people would be relieved it wasn’t reflux but I was so sure that this was what was wrong and now this meant that we still had no idea what was wrong with me. As expected, the results came back negative.
I went back to my urologist and she scheduled me for a cystoscopy, which I knew very little about. I couldn’t have that test done for about a month, and she told me until then to do as much as I could to keep my urinary tract bacteria free and healthy. I started drinking cranberry juice RELIGIOUSLY and I was taking cranberry supplement pills daily as well. I was also eating and drinking things every day which I later learned were very bad for anyone with IC, for example I was regularly eating/drinking coffee, tomato sauce, chocolate, vinegar, etc… By the end of about 2 weeks of doing that, I was waking up every night with chills and getting up to go to the bathroom multiple times. I would have trouble going back to sleep due to lower abdominal pain, and I would wake up feeling depressed, achy, and miserable.
Finally I woke up one morning and couldn’t even go to school I was so depressed and in so much pain. I went to my regular doctor for a cough I was having, and when I was there I mentioned that I was currently having UTI symptoms 24/7. “You probably have Interstitial Cystitis, but your urologist will diagnose that”.. that was the first time I heard the words IC, and I immediately went home and researched it. It sounded exactly like what I had, down to related allergies and symptoms getting worse during my period (something I remember happening for as long as I’ve had my period). I still hadn’t had the cystoscopy yet, but I immediately changed my diet completely, cutting out everything I read that was bad for ICers. Within a week I felt so much better, and when I finally had the cystoscopy she said she found scarring and even though it wasn’t severe, I definitely did have IC.
I’m currently on Elmiron, but I’ve only been taking it for a week or two, so hopefully in about 6 months I’ll be feeling a lot better. Since I haven’t been aware of my IC for long, I’m still adjusting to the new lifestyle… for example I accidentally had honey mustard the other night and flared immediately after. But changing my diet has helped so much, and finding this website has been a huge part of my coping and managing my stress/pain. I can see the light at the end of the tunnel, and I’m very grateful for all the information available to me that has allowed me to take care of my health and do everything necessary to feel a little better every day.
Elena
