The long and winding road...

According to the Mayo Clinic the average lapse between onset of IC and diagnosis is four years. Four years!? That's college. Looking back I wonder, "How long have I had this?". For the past two years I have been in and out of doctor's offices and emergency rooms. I have kidney stones and a history of UTI's (urinary tract infections), which are typically the conditions that mask the fact that IC could be the real problem. I have been on every antibiotic known to man, and yet every other week or so it felt like I was developing a new UTI. It really started to put a strain on my life, not to mention my relationship with J. I felt dirty, infected, contaminated. How are you supposed to be emotionally connected to your partner, when you are keeping them at a distance because you think you're gross?

About a month ago I was home in Texas for labor day, with my family and J. My mom, sister and I had spent the morning chatting and enjoying the first good weather Texas had had all year, while my dad took J golfing. As we sat by the pool sipping spritzers (how waspy is that picture?) I started to feel the all too familiar pain in my lower back and pelvis that I had come to associate with kidney infections. Are you kidding me, body? I am having such a good time. Don't do this to me now! I was on 3000 mg of antibiotics at the time, for various infections, including yet another UTI. Between all the medications prescribed to me by my family physician and urologist, I was taking ten different medications and over 25 pills a day. This took a serious toll on my physical and mental health. A few days prior to my trip to Texas I had a serious meltdown. We're talking can't stop crying, raccoon mascara, snot bubbles, HOT MESS meltdown. No 25 year old who isn't living with cancer should be on that many prescription drugs! I was carrying around a pharmacy in my purse, probably setting myself up for a mugging by a drug lord. And the irony of it all is that I would soon find out that they had nothing to do with the real problem.

I excused myself upstairs to lay down and hopefully work through the pain. Then, I felt a new pain that I had never felt before. It felt as though my urethra was being torn in two. The pain was so unbelievable I couldn't stop vomiting. I spent the rest of that trip and the weeks after in excruciating pain, thinking that I was passing kidney stones. Imagine my surprise when my x-rays revealed I definitely wasn't. This is when my doctor brought up the term IC. She described it as an overactive bladder. I thought, "Ok, well I do pee all the time, but what about all the pain?" She gave me pamphlets about IC that I'm pretty sure I threw away as soon as I got home. This was just one more thing they could use to prescribe another pill. I was definitely in the Bitter Barn. In the past two years, doctors have suspected I have a number of conditions. I have been tested for celiac disease, lupus, MS, every STD there is (that's a fun one to explain to parents), and the kicker...I was told I have diabetes. I DON'T. The past two years have been a roller coaster of diagnoses, antibiotics, specialists and more blood tests than I can count. To top off this fun sundae with a cherry, I have horrible insurance, so this journey has not been a cheap one. I am so lucky to have parents who support me and don't rub it in when I have to make the dreaded "help" phone call. But not everyone has that support, so how much worse is this process of misdiagnosis for others?

Another thing that really burns my cookies when I think about it, is that the Dr. who diagnosed me with IC is the third urologist I have seen in two years. The first was a total jerk who made me feel dirty and infectious and the second performed a surgery to remove my kidney stones, but didn't find anything else wrong with me. I have been bounced around from doctor to doctor and it is so frustrating. I wonder how many people out there are dealing with this pain, probably keeping it to themselves because it is so embarrassing to talk about, or have had a doctor make them feel like a hypochondriac or an untouchable? As a pre-med student why had I never heard about IC? So many why's are taking up space in my brain right now.

I have spent two years feeling sick and tired of being sick and tired. I have felt like a hypochondriac and I have lost the joyous person I once was. I have wondered at least once a week when J is going to get fed up with all my health drama, or when he will start thinking it's all in my head. I know my friends and family are sick of hearing about it. Finally knowing what is wrong, even though it sucks being diagnosed with IC, is such a relief because I feel vindicated. Something IS wrong. I think the hardest part of being sick, for anyone, is not knowing what is wrong, not being able to voice your pain, and not being able to find relief because how can you fix something that you don't know is broken?

To everyone out there, diagnosed or not, if you know in your heart you are sick, that something is wrong, don't give up. Keep fighting until you find out what is wrong. Don't let your doctor bulldoze you. Don't take no for an answer. Don't let naysayers make you feel ridiculous. We have to be our own advocates, because no one else can feel what's wrong. It took me two years to find out, and for the first time I feel like I have my life back and that I'm in the control seat again. I want everyone to feel that too.