Interstitial Cystitis Advice

By Jessica Cangiano

Originally posted on December 22, 2004



There are few experiences in life quite like wondering, being told we have, or living with a serious, chronic medical condition. The thoughts that begin to consume your mind are often frightening and wrought with anxiety or concern. One question leads to a hundred others, finding answers becomes something like chasing butterflies without a net. Elusive.

For many it is not until the onset of their symptoms or for some patients’ even long term suffering before they become familiar with the word Interstitial Cystitis. What does this mean-this intrusive long name? Quite literally it means, inflammation (cystitis) inside (interstitial) the bladder wall, a term coined in 1887 by A.J.C. Skene, derived from Latin words. But to ask what Interstitial Cystitis (IC) means is to delve much, much further into a baffling and strange medical condition, which affects hundreds of thousands in North America alone, most likely millions the world over.

The clinical definitions of IC offered now in the middle of this the first decade of the twenty first century are typically accurate. The symptoms are described in cold, sterile medical terms. Often with words a new or potential IC patient is unaccustomed to using in their daily life. The definition offered on this site under the FAQ section is it’s self somewhat clinical, and that’s okay. It’s perfectly fine to be scientific and of course medically accurate. But in addition to such clinical terms, it’s vital, I can’t stress that word enough VITAL that any medical condition never be without a touch of personality and candour.

IC is a condition, a disease if you prefer of the bladder and the urinary system. It affects people of every walk of life, race and age. It can strike like a viper without warning or slowly grow over time like a snowball casually rolling down hill. Chances are before your symptoms began you had never in your life heard of IC, that’s normal, most of the population never has.

IC isn’t talked about over water coolers or beers after work. It isn’t the illness/disease given to characters on TV shows or in movies. Big fundraisers (sadly) are not held in it’s name, kids don’t go door to door selling over priced chocolate almonds in it’s name. IC hides in the shade of the medical world like a timid animal. And in many regards who could blame it.

Medical references to IC don’t stretch back to the ancient Egyptians, the Greeks or even the Renaissance, instead it appears that it was not until the 1800’s that symptoms of IC were even recorded in medical literature. Women (the majority of IC patients are women, most educated statistics put the ratio at 90% women, 10% men, however it is likely more men have IC but are wrongly diagnosed, often with bladder infections or prostrate conditions) were typically scoffed at when they described symptoms, told it was all in their minds, or simply stress, what few treatments were available rarely offered any relief. And this essentially continued on well into the twentieth century, unfortunately for some this mindset continues even today. In the 1980’s IC began to finally receive some desperately needed…well medical help. Perhaps IC had simply had enough, it crawled to an emergency room and admitted its self for treatment (proverbially speaking).

Today there are numerous medications and treatments that may offer some relief of IC symptoms to patients, but there is no cure. No magic pill or wonder drug to give those who develop this strange condition.

IC has no definitively known cause. No genetic marker (or markers as in the case with some conditions/diseases) has thus far been singled out. The testing needed to properly diagnosis IC is invasive, as no blood test or urine test has been able yet, to currently determine whether or not IC is present in a patient.

For many, myself included, I had no prior warning that I was going to develop IC. I had never in my adult life had a bladder infection (urinary tract infection, also know as common or bacterial cystitis). I had always been a relatively healthy, active person; save for the fact that in the year proceeding my development of IC I developed IBS (Irritable Bowel Syndrome) and Fibromyalgia. And then, this is the honest to goodness truth, I woke up one morning, I can’t recall the exact date but I recall the intense feelings. It felt as though an elephant was jumping on my bladder. All the while being stung by bees and set on fire. I began to void (pee) 40, 60+ times a day. I knew in the core of my soul and the pit of my bloated stomach something was horribly wrong.

I like most people, had never heard of IC, why would I have? No one I knew had it and it’s not a disease of public awareness. There are no adds of people running down a pristine beach with their dog or laughing at a picnic and vaguely describing medications (drugs) available for it’s treatment. It was never taught in my biology classes (or any other science for that matter). Not written about in any magazine I had ever read, not even (at the time when I developed IC) mentioned in any of the IBS books I had read. So I had the logical idea, that surely I must have a bladder infection. After a couple days of literally not being able to stand up from the pain I went to a walk in clinic and took a urine test to check for infection. The results were negative. Second, third and so forth tests came back exactly the same, even when I went to different doctors and clinics. Baffled I asked could it be something more serious, not a single doctor, including the female doctor I saw when I went to the emergency of a big city hospital, said yes or even perhaps it could be (something more severe). Answers ranged from, “It’s probably a UTI, but not strong enough {levels of bacteria} to show up on the tests”, to “No you’re young and healthy, drink more water it’ll go away”, to and I swear this is the truth “No you’re too pretty to have anything wrong with you” (from a middle aged male doctor). They prescribed various antibiotics that I took, but none helped, some made me more nauseous than I had ever previously been in my life.

I had already experienced similar “treatment”, when I was hunting for an IBS diagnosis, I was already aware of how the many people in the medical community treat you if tests come back negative, if you claim pain but have no visible wounds. So after about 3-4 weeks I began doing my own research. I had no home computer then, and snuck moments at work, to look up information. I needed to know what the hell was wrong with me. (It’s worth noting that on the exact same day I began to experience IC I began to have symptoms of Vulvodynia, which I assumed at the time was initially also caused by whatever was affecting my bladder.)

I will never forget the first time I read it, the definition of IC. Call it six sense or intuition I knew that this was what was (and continues to this day), affecting my body. I read everything about IC that I could. Shocked to find that at that time, not one of my cities seventeen or so libraries had a single book about IC. I printed off information and re-read it at night. Relieved to know I was not dying but hardly closer to any relief. I ploughed on, looking for a reliable doctor who would take me seriously. I saw one, a woman in her early thirties for a number of months, but she rarely took me seriously and booked urologists appointments over 7 months in the future. I couldn’t wait 7 months, no let me rephrase that, I refused to wait 7 months. One visit to her office-a bus, train ride and several block walk from where I was working at that time, I was insulted more than I have ever been insulted in my life by anyone. Perhaps tired of my descriptions of pain, by my belief that I had IC, my new symptoms that appeared and intensified, (I will summarize what was said to me) she told me I was sick in the head, and needed mental help.

I left her office so angry I was truly seeing red. I never looked back, never spoke to her again, amazed that not only a doctor, but also a fellow woman could be so malice, so cruel. I went to several more doctors, turned away by some (“I don’t take patients with symptoms like you”, fascinating I thought general practitioner covered everything) and was helped little by others. Exhausted I moved provinces and finally found the doctors I so desperately needed (I will forever be indebted to you). I was quickly diagnosed as having Vulvodynia, Vulvar Vestibulitis and a formal diagnosis of Fibromyalgia. They didn’t laugh when I said I thought I had IC, in fact my wonderful gynaecologist began to suspect I might have Endometriosis due to the severity of my pelvic pain.

Approximately 15 months after my first symptoms reared their heads; I had the necessary surgeries to determine what was the cause of my ongoing health problems. At the risk of sounding arrogant, I didn’t “need” surgery to tell me I had IC. I knew it as much as a person could ever know anything. The results of the tests were that I had IC, and a considerably decreased bladder capacity. No endometriosis was found thankfully, but I also was diagnosed with Pelvic Floor Dysfunction (PFD, not to be confused with the computer document a PDF).

Finally hearing a doctor tell me these things was like receiving manna from heaven. For even if I was certain (that I had IC), I had not been given any treatment thus far which relieved any of my IC/vulvar symptoms. I was started on Elmiron immediately (I had asked for it in two provinces for about a year, to no avail). Also I asked and was subsequently also put on the antihistamine Hydroxyzine, as there is a growing amount of evidence that IC is affected by mast cells in the body and bladder.

So there I was with my diagnosis, my great doctors, and finally the peace of mind I had so sought. But a diagnosis alone doesn’t eradicate illness. My life was in pieces, I had not been able to work for months, I had no social life. I had lost many friends and stopped dating. I was in intense, constant pain, voiding on a good day 35 times on a bad day over 80, waking so often at night I was lucky to get a combined two and a half hours of sleep a night. I had long before started on the IC diet, and eliminated many foods from my daily eating-this does help, or rather does for me. I wouldn’t say I was depressed but I wasn’t exuberantly happy either.

But life goes on, and I began to get some relief from the medication. I kept reading and researching IC, seeing my doctors regularly, experimenting with diet and vitamins, alternative therapies and other medications. I have also been blessed enough to have found and married the love of my life, who is my biggest support in the universe. All the while I knew one day I wanted to make my own IC website, how could I not, so few exist (granted those that do, are often thorough and wonderful sources of information.)

Here it is, the beginning of that site, taken from the realm of my brain into the vast and expansive world of the Internet. Icadvice.com is a labour of love. My small, humble way of giving something to the IC community and everyone touched by IC. If one day someone writes to me and tells me that they discovered that they had IC as a result of this site, than my heart will smile with happiness, I will feel as though I have made a difference in the health and well being of another person’s life. I am creating this site for the entire world, but especially for those who may have or already do have Interstitial Cystitis.

It is not complete now, in the sense that some areas are empty or sparse, but it is being worked on around the clock. It will never be finished though, even if tomorrow a cure for IC was found because people will continue to develop IC, continue to need support and information. I will add articles, topics, recipes, etc very frequently. Some will be strongly oriented to a scientific and medical basis; others will be my own opinions, even my humorous look at IC and its complications. For as important as it is to know, and understand the medical “facts”, it is also completely important that IC information never seem as scary and bland as the white walls of a hospital corridor. It’s okay to smile, even if you are in pain. I know that there is a natural tendency to reject light-hearted words when you feel like you could roll over and die, but I can assure you that you won’t die of IC and that it’s perfectly okay to want to smile and laugh. You or someone you care about may have IC; people develop IC-we don’t know why, we can’t cure it yet, and it can progress over time, but you are still the same soul, the same person you were before IC. You get IC, but IC will never get you unless you let it.

So I urge you to join our boards, to write to me, to ask questions, to keep learning and researching. To advocate for IC rights, to start support groups, to love yourself even when you are hurting. I still live with IC (and related conditions) every day, but through knowledge and online support I have learnt about this mysterious condition and that I am not the only person in the universe with IC.

I offer you all of my knowledge-my advice, and the heart and understanding of someone who has and continues to fight the same health war that you are waging battle against every day, every moment of every day. Intelligent caring advice, an acronym derived from the abbreviation for Interstitial Cystitis (IC), but moreover the life-goal and my sincere personal hope for this site and all who enter it.