are here: Interstitial Cystitis Network
: Patient Stories : Alexa
of Healing & Hope"
a wife, daughter, sister, teacher, colleague and friend
that happens to be dealing with IC."
Alexa, Vancouver BC Canada (Submitted August, 2003)
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
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
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.
Revised: 3/01/05 - kj
What's New / Site Map / Become an ICN Subscriber / ICN Home
The Interstitial Cystitis Network
All rights reserved.
Copyright © 2003