My name is Sarah, and I’m 22 years old, living in Ontario, Canada. I didn’t have the greatest childhood, but I had a wonderful mother. I’ve had this pain since I was around 12 years old, and it has just got worse as I’ve grown into an adult. I missed out a lot on spending time with my friends, having to fake sick. I missed a lot of school, and a lot of work. I complained a little about my pelvic pain to my mother when I was younger; every time she thought it was a UTI (urinary tract infection), she’d send me to the doctors. Every time, it came back negative. She’d send me there every 6 months, and it would stop every time with “it’s not an infection. I’m not sure what to tell you”.
It got worse. I was 14 and a half, and my father would tell me that “it’s all in your head”, but I knew mom believed me. She kept taking me to the doctors. My doctor told her, “we can’t find any infection. Maybe it’s all in her head”. A year later, however, I heard those dreaded words slip her mouth: “Maybe your father is right sweetie. Maybe it’s all in your head”. Maybe she was right — maybe everyone dealt with this pain, because this pain is normal. Maybe I’m just being a pansy about it.
However, it kept getting worse, to the point where I couldn’t go to work or school. My father yells, “stop faking! Go to school, or else!” But I wasn’t faking. I loved working, and I ADORED school. All my friends were there, and it got me out of the house — away from him. I was just in so much pain, that I couldn’t leave the bathroom. Every time I tried, it’s like I had to go pee again, and it would burn and sting — almost just like a UTI. Although I knew it wasn’t a UTI. It couldn’t be — not after the amount of tests I’ve had done!
Years went by, and I kept my silence. My father was put in prison, and my mother was a write off. My older sister was of no help, so I was the only one who she could rely on. I couldn’t have her worrying about me when she was trying to get her life back on track. Things were good. I was 18, bought a house, owned a sweet ride and had good friends. I even finished my high school online since I dropped out in the 10th grade. I felt like I was finally going somewhere … Until one day, it hit me. The pain was so intense, I had to crawl to my phone out of the bathroom. I thought for sure I had an infection.
I told mom to meet me at the hospital. After a long wait, the doctor said those dreaded words, “well, it’s not an infection”. Great. Go ahead and send me on my merry way again. I’ll just mope around in bed since I’ve already called in sick to work. “Although I think it might be a disease. I’m not certain though. Have you ever heard of Interstitial Cystitis?” Of course not. So she sent me to a specialist. A urologist. Supposedly the best there is around here.
So I finally get to visit him, and he seems nice. Although he says he’d like to do a cystoscopy to rule out any other issues. I’m an 18 year old girl. I’m embarrassed for my life knowing he’s going to see my privates. However, I can’t live with it anymore. I’ve gotta have it dealt with. He tells me to start the ‘IC Diet’ to see if certain foods trigger it. I already knew that water made it worse, and my favourite Oranke Peeko.
So, we get a cysto done. He sees the red spots on my bladder. Inflammation everywhere. Great! Someone FINALLY sees something! Maybe now I’ll get some help! He says it’s definitely IC, and to meet him back in his office. So I do. He says it’s IC, and it’s rare to find it in a woman my age, however there’s not much they can do about it. They only have a few treatment plans that aren’t 100% effective, and may not even work. I broke down crying. The one time someone finally believed me, and knows I actually do have a problem — even a name for it … And he tells me I may be living with this forever. I can’t believe it. So he put me on an all-natural medication called Cysta-Q, and the go-to drug for patients with IC called Elmiron.
I took the Elmiron as instructed. 2 weeks went by, and so far — nothing. No change at all. Until my hair started falling out in clumps while I was taking a shower! It was terrifying. I called the office right away, and they told me to stop taking them immediately. I complied. I took another visit to see the urologist. He said we’d better try some instillation treatments at the hospital. We’ll start every week on Uracyst and Heparin, until I start showing signs of improvement. I never showed any signs of improvement.
It’s been 4 years since I was diagnosed with IC. After years of treatment (both with my urologist and working with word renown Dr. Curtis Nickles and his clinic trial crew), I am no better off than I was originally. It has got so bad, that I am no longer able to work. Not even part time. I am stuck on Ontario Disability, I’ve lost all my friends, I’m stuck on drugs like Oxycotin, Percocet and Morphine (which don’t work as well as you think they would), I’ve become extremely depressed, I have tried multiple suicide attempts to get rid of the pain, I feel incompetent to my partner because I can’t have sex with him as often as I would like to, and I feel like a complete failure. Especially to my partner, my mother, and my new-to-this-word daughter. It’s not the fault of anyone. My doctors are doing all they can, and I understand completely … It’s easier to deal with when you lose hope. You’ll stop thinking “maybe this time, the pain will go away!” When really, it stays right where it is.
I’m a new mother, with no hope for the future, other than within my daughter who I am thankful for every day. Support from my family makes me feel cared for, but seeing my daughter thrive is what keeps me here on this planet, living in hell.