Although I had experienced IC symptoms throughout my teenage years, I was not officially diagnosed until September of 1997, only weeks before my 21st birthday. After being referred to numerous family physicians and various specialists, one urologist finally gave a name to the excruciating symptoms I had been experiencing – Interstitial Cystitis.
I had been struggling with a long series of bladder infections during my last two years of high school and into my first year of university. However, over time, starting in my second year of university, my urine cultures started to come back clean – with no indication of an infection. Puzzled, my doctors continued to prescribe antibiotics and pyridium anyways. During this time, I was referred to a gynecologist, two urologists and a gastrointestinal specialist, as well as being strongly urged by one physician to see a psychiatrist since he suspected my symptoms could be psychosomatic.
After numerous testing, lots of poking and prodding, and combined with exhaustion because my IC symptoms were keeping me from sleeping – I, too, started to wonder if this all could be in my head. My symptoms – frequency, urgency, nocturia, pressure and pain – were not improving, my school work was greatly neglected and my marks were suffering – I was at a loss of what to do. I was eventually referred to one more urologist, one who specialized in pediatric and adult urology, and after explaining my symptoms to him, he suggested that perhaps I had Interstitial Cystitis, but a cystoscopy and hydrodistention were needed to confirm it. He also mentioned he would do a biopsy at the same time in order to rule out other possible causes for my symptoms. After discussing this with my parents, I agreed to have the procedure done – I was desperate for answers and even more desperate to be relieved of these symptoms.
My urologist confirmed a diagnosis of IC, and as I was waking up from the general anesthetic in the hospital, he came by my bed, put a brochure about IC in my hand, as well as prescriptions for pyridium and Tylenol 3. He said I should see him in a few weeks for a follow up appointment. More than anything, I was extremely relieved that he had finally put a name to my symptoms, and I was determined to find a medication and/or treatment to help me.
During the first few months after my diagnosis, I tried many different medications, none of which proved to successfully help my IC symptoms. My urologist eventually suggested trying Elmiron, but I was a little nervous since relatively little was known about the long-term effects, and I was young and did not want to jeopardize my future health in any way. But at the same time, I was desperate to feel better. During this time, school was still on the back burner, I was getting little sleep, and I was in a lot of pain. I was emotionally devastated at the idea that this was my life at age 21, and physically devastated by the chronic pain and other IC symptoms my body was experiencing every day. I made the decision to try Elmiron – and it gave me my life back.
Throughout the time I was trying to cope with and mange my health issues, my attendance was slipping and my grades were falling at school. I tried to explain my situation to my professors, and while some were understanding, others looked at me with disbelief when I said I needed to use the bathroom every 20 minutes. One supportive professor suggested I see an academic advisor, which was great advice. My academic advisor assisted me in dealing with my professors and choosing my classes. At the same time, she insisted I see an advisor at the Disability Resource Centre (DRC) on campus. I was taken aback by this suggestion, since my interpretation of a “disability” did not include someone with IC. It took me a while to actually step into the DRC offices, because every time I walked by I started doubting that I, in fact, had what is considered a disability. After a couple of weeks, I finally ventured into their offices, and met with an advisor. He said that the DRC is there to ensure all students receive fair treatment and equal opportunities at university – they are there to level the playing field between those students who need extra academic support and concessions, and those who do not. He also explained that the definition of “disability” has a broader context than most people believe, which is why perhaps it took so me so long to enter their offices!
After providing the Disability Resource Centre with letters from my urologist and family doctor confirming my diagnosis, they offered me various academic concessions in order to support my learning. In reality I did not end up using half of the accommodations they offered me, but it was enough that they believed and supported me. I felt so relieved and empowered to have someone on my side at university, and I knew I could count on them for advocacy and support if I needed it. They sent a letter to all my professors saying that I had provided them with medical documentation indicating I was entitled to academic accommodations through the DRC. They provided a note-taker in case I was unable to make it to class due to illness (which I used a few of times during flare ups), and they let me take all of my exams in their offices, right next to the bathroom!! This was particularly helpful since my frequency increases during times of stress (especially during exam period!).
Over a period of a few months, Elmiron slowly started to kick in and my symptoms improved. Elmiron was not a cure, per say, but with time my good days became more frequent, while my bad days became less frequent. I was also sticking very closely to the IC diet, figuring out what my triggers were, and experimenting with my diet. Eventually, I was able to go back to school, but had to make up some courses during the summer that I had missed during the regular school year. I graduated in 1999 with my BA, and went back to school a few years later and graduated with my teaching degree (B.Ed) in 2003.
The physical relief I experienced with Elmiron is but one aspect of healing, however. The love and support from my family is immeasurable, including the love and commitment from my husband. We met after I was diagnosed – when I first started taking Elmiron -and instead of running away once I told him that I had IC, he actually sat down at the computer that night and researched everything he could find on the subject! I know IC has impacted his life as well, but he has always been incredibly kind, loving and supportive throughout our relationship. The emotional support and love I received from the ICN was also important since we could all related to each other first-hand. I came in contact with the ICN shortly after I was diagnosed, almost 7 years ago, and have made wonderful friends who I have shared laughs, tears, experiences and advice with. I am extremely grateful of Jill’s vision and hard work, as well as to all my ICN friends, many of whom I have known for several years now.
I am now a teacher and a wife – two things that I never imagined would be possible when I was suffering with unbearable IC symptoms over six years ago. I am also happy to once again be the same daughter, sister and friend that I was at one time. Of course I still have IC – and have my good and bad days – but the difference is that my good days FAR outnumber the bad ones now. Early on I received some advice that has stayed with me throughout my IC journey: YOU are not IC. Even on my most challenging days, I forced myself to distinguish between WHO I am, and WHAT I was physically experiencing. I am not IC. I am a wife, daughter, sister, teacher, colleague and friend – that happens to be dealing with IC.
