"A Happy Life, In Spite of IC"
By Melanie J. (Columbus, OH, USA)
My IC story begins back in August 1998 when I was 28 years old. I had finally managed to afford to switch to part time work and go to school full time to finish my degree at Ohio State University. I had also recently met the love of my life, my now husband JR. We had just begun intimacy in our relationship when what I thought was a routine UTI developed. This was not uncommon for the women in my family, including myself, to develop UTI's relating to sexual intercourse (I later found out that my great grandmother had chronic bladder symptoms which were never diagnosed nor alleviated by medications from her physicians - we suspect IC!). I had gotten UTI's on and off during my 20's. In fact, I would keep Cystex pills (an over the counter bladder analgesic) on hand and drink lots of cranberry juice to stave off a UTI if I felt one coming on. Only once do I remember going to the doctor to be told I tested negative for a UTI. In all other cases, it either went away before I needed to go to the doctor or I indeed had a confirmed UTI which was successfully treated with short term antibiotics.
My normal UTI symptoms developed after a couple of weeks of intercourse with my new partner. I immediately began my normal self help routine and contacted my doctor to get an appointment. The initial urine dip didn't show bacteria but she prescribed antibiotics for me, with the expectation that it would show up in the culture. I believe that I tried two different antibiotics at this time before finally feeling better. After a couple of weeks of doing fine, the symptoms reappeared. I went through this cycle of testing/taking meds/feeling better/relapsing for several months beginning with my primary care doc, my gynecologist and then an urologist. My primary care doc thought perhaps I had herpes in my urethra (!). My gynecologist tested for a number of sexually transmitted diseases, all which came back negative. My urologist thought it was an unusual bacterial infection which would be difficult to test for but could be treated with antibiotics. Finally the cycle ended and the symptoms stayed for good, with no antibiotic helping. I, being the inquisitive bullheaded person that I am, immediately began doing research on what else it could be. I wandered across Larrian Gillespie's "You Don't Have to Live with Cystitis" book and learned about IC. At this point, my symptoms had evolved into more than just a UTI. I was having difficulty with sensations of pressure, pain, and clitoral sensitivity, along with severe urgency and some frequency. I read Gillespie's description of IC and knew that was what was wrong with me. It described my symptoms and experience perfectly. I immediately got online and discovered the ICN and the ICA. I read voraciously to educate myself as best as possible, as I knew that I would probably have to advocate for myself to get the help I needed (at that time, it was the norm that it could take years for an IC patient to receive a diagnosis and proper medical treatment).
I broached the topic of IC with my urologist. After trying a number of medications, he agreed that we should do the cystoscopy/hydrodistention/biopsy to look for IC. At the time, this was recognized as THE way to diagnosis IC. Unfortunately, my results only showed inflammation - not the classic IC hallmarks such as ulcers and pinpoint bleeding. My bladder capacity was also quite large. Due to these findings, my uro said I did not have IC. In fact, he told me he didn't know what was wrong with me and didn't know how to help me any further all the while with a smile on his face! I cried with hopelessness all the way out of his office. The only good thing that came out of that whole experience was a 3-4 month remission of my symptoms. But they cruelly returned by mid summer and I immediately I sought a second opinion - particularly since I knew that a remission in symptoms was not uncommon for IC patients who undergo hydrodistention.
I received a recommendation for my wonderful second urologist from my primary care doc's office. My new uro worked carefully with me to rule out all other possible conditions, considered my medical history, reactions to medications we tried, and test results before diagnosing me with IC. We even tried long term antibiotics, just to make sure that it wasn't a hidden, low count colony infection. Finally, after having a positive reaction to the Potassium Sensitivity Test, I was diagnosed with IC in November of 1999. (Researchers now understand that there are two sub-types of IC - ulcerative IC, which is the classic, hallmark symptoms of Hunner's ulcers, hemorrhages, etc; and non-ulcerative IC. By sticking to the stringent clinical research guidelines of the NIDDK on IC symptoms, physicians in their clinical practices were/are missing the diagnosis on patients such as myself who do not have the classic signs upon distention but have all or most of the symptoms. Researchers now recommend diagnosing IC by exclusion. Had it not been for my knowledgeable urologist, I would still be suffering horribly without proper treatment for my disease. See the NIH/NIDDK Diagnostic Criteria for IC section at this URL: http://www.ic-network.com/handbook/basics.html#diagnostic)
At the time of my diagnosis, my IC was in full flare mode. I had horrible sensations of pressure, urgency and moderate pain constantly. I also had some elevated frequency but manageable (14/day). My pelvic floor muscles were constantly in spasm, making intercourse and even the use of junior light tampons very uncomfortable. I also experienced clitoral sensitivity and tingling bladder sensations. I had already started on Ditropan XL prior to my diagnosis, which helped some. Initially, my uro wanted to try DMSO, which I refused. I had read about Elmiron here at the ICN and wanted to try conservative, oral therapies first. I also learned about pelvic floor dysfunction and physical therapy from visiting the ICN, and got a referral from my gynecologist to a pelvic floor therapist in my area. Lastly, I'd read about foods and beverages being potential irritants, so I began to pay attention to my symptoms relative to my diet by keeping a voiding/diet log. Much to my surprise, I noticed a pattern between my consumption of tomatoes and chocolate to my bladder symptoms immediately! I started both Elmiron and physical therapy, along with avoiding common IC diet triggers, about three months after starting Ditropan XL. I immediately began to feel better. I cannot say definitively which therapy helped the most, as I believe it was probably the combination of all that really helped my bladder to begin to recover.
What I have found
is the longer that I'm on Elmiron, the better and better I feel. This
year (2002) has been the best year yet. Now, I have little to no symptoms
most days. When I do flare, it is related to eating something I shouldn't
have, stress related or due to a UTI. I have been able to expand my diet
back out again, eating foods that would have sent me into flares even
just a year ago (though I still have triggers I have to avoid such as
tomatoes). Had someone told me when I was struggling to get a diagnosis
that I would again feel healthy and live a normal life, I wouldn't have
believed it. I was certain my life was over, that I would never finish
college, have a successful career or be with my love. Now, I'm happily
married to that same wonderfully supportive and caring man, finished college
and graduated with distinction, working in a career that I love (career
services coordinator/advisor at a university) and we just bought our first
home. We travel regularly, with trips as far as San Francisco and Hawaii
(I'm in Ohio) and regular camping expeditions in Ohio and New York state.
I see my uro twice a year to check in and get my medications refilled,
unless I develop a UTI. Life is good once again and I have a new found
appreciation for my health and well being, something I took for granted
in my 20's. IC also taught me tremendous compassion for those who are
ill and suffering. I received a tremendous amount of help and support
from the good folks here at the ICN, so much so that I've stayed here
to help other ICers who post on the message boards. I remember when I
was struggling to get diagnosed and beginning treatments that I was desperate
to hear from people who had improved and were living successfully in spite
of IC. I hope by sharing my experience that it gives hope to those who
are in need of a positive story. See you on the boards!
Revised: 3/01/05 - kj