Interstitial Cystitis Advice

Not to long ago I took what I hope will be the last of several long train journeys. I am not typically one to engage in conversations with the people seated beside me when I’m taking some form of public transit. It’s not that I’m unfriendly, not all at, I just prefer to be at one with my thoughts instead of hearing about how exciting the dry cleaning business is, or why you keep going back to your cheating boyfriend. Yet a conversation was struck up between the young woman seated next to me and myself (she was clearly elbow deep in scads of homework).

She was a medical student with hopes of going into paediatrics, certainly a wonderful and important career choice. Now to be fair I don’t know what year she was in, I would venture to say 4th based on how old she looked but really it could have been anywhere from 2-6. The question of age did not arise and I knew only that she hadn’t begun her residency (I’m not one to pry strangers for details).

As much as at times I would like to, I don’t go around waving a sign that says, “IC awareness is vital”, and I judge with great discretion whom I speak to IC about, yet in the course of our dialogue (I believe I said that I eat around a medical diet, and that broached the subject of IC) it arose.

I simply said that I have Interstitial Cystitis (no need to list off all my conditions). To which she replied with a vexed but curious expression, “what’s that? It sounds complicated”. I gave a quick definition, and explained the principles of the IC diet to her (avoid acids, preservatives, artificial foods, caffeine, alcohol, etc). And that was about all that was said on the subject. She did seem genuinely interested it was I was saying though.

So why than you ask, am I retelling this story? Because I think that it highlights an interesting fact. Regardless of what she (or any med student) wants to specialize in the long run, for the first few years medical students all study the same things. From the same books, same fields of information (with leeway of course for variants from school to school and country to country).

Given that her work was laid out on the table we shared on the train, I could see that she was at the moment studying mental health and neurological diseases. Words like Parkinson’s, Alzheimer’s, and tumour abounded on her papers, though I didn’t intensely read what was there, that would be I felt, rather rude.

Herein enters my gripe, and again I don’t know how far along in her studies she was, but why had she never heard of IC?

Yes, I realize that sadly, ever so truly sadly, few generalized medical textbooks give IC more than a paragraph or two. I don’t say this guessingly; I’ve flipped through one and two thousand page modern medical textbooks and nursing schoolbooks and in some there has been not even one mention of IC that I could find.

There is an unmistakeable shock factor there. How can one of the most intense and frequently occurring bladder conditions be so widely and grossly overlooked? If this obviously intelligent young woman does enter paediatrics she will most likely not be dealing with Alzheimer’s, a condition primarily of the aging not the infantile. Yet she could encounter (in young children) something like IC, and/or parents with the condition, such as pregnant women.

Now there is nothing to say that by the day she dawns those shinny black and blue robes and proudly receives her diploma she will not have heard about IC. But it was clear that she had never heard of it. And I like to think that if I had given no explanation, she could have deduced that from the name that it was related to the bladder (cystitis being a scientific term for a UTI). But what if by the time her name was called to the stage she had not heard of IC?

Surely she could tell you medical facts that you and I will likely never know, but how could something to critical as IC be so easily overlooked, and if it was (or is) where does the fault lay?

The textbooks themselves are little more than paper and words, written by doctors and researchers who will not be teaching (in person) most of the doctors of tomorrow. So then the onus is shifted to the professors, teachers and the students themselves. If a prof is giving a lecture on the structure and function of the bladder it is up to him or her to divulge the minds of those present into the world of bladder conditions like IC. I think and will always feel that a doctor must forever be learning, and reading.

Subscribing to medical journals that are bought for the sake of it, just because all your peers and predecessors did it does not constitute reading. Of course no doctor can know about every medical condition (in an in-depth sort of way). But we aren’t talking about some incredibly rare condition that affects maybe a few hundred or thousand people on the planet. No, IC is shared by millions of patients worldwide, and it is not a small matter. Its gravity is equal to that of an UTI, if not more so, as it is a persistent, chronic and (currently) incurable illness.

Undoubtedly better education into IC would lead to more patients being sparred the atrocious horror that is so commonly getting an IC diagnosis. They might not be looked at like nuts or lepers when describing their intense symptoms. They might be tested earlier and more accurately, given medication after only weeks not years of suffering.

Why IC has been so largely overlooked is a question with a thousand facets, the likes of which may never be explained or explored properly. For decades doctors were essentially told that IC (like a host of other conditions that primary or entirely affect the female population) was all in the heads of their patients. Words like hysterical and hysteria, Valium, relaxation, and “forgetting about it” abounded. And all but a few doctors just went along with this hogwash, and all but a few patients continued to suffer the IC wrath.

It is by the grace of a few who choose to stray from the flock that IC knowledge, research and treatment is where it is today. Yet as we head towards the middle of the first decade of the third millennium IC education still horribly and sadly has not come up to speed. What one might call “old school” doctors are still known to utter the “in you head” speech and scoff at the notion that IC is anything more than a trite “female problem.” Others still understand that it is real, but their knowledge of IC hardly goes beyond those 150 words they read on the subject between learning about the severity of male impotence and the chapters devoted in general practise textbooks to incontinence.

One would pray that anyone today who choose to go into urology or gynaecology (or for that matter gastro-intestinal or neurological medicine) would have a solid and in-depth understanding of IC and the gravity of this condition. But I fear this is not always the case. Equally important, I feel, that all medical students choosing to be general practitioners should be well educated about IC. For it is most likely these future doctors who will be the first person patients come to with IC symptoms, not the specialist to whom they may later be referred (as the medical systems of the world likes to adhere to this asinine system whereby you must go through a GP to get to a specialist, often only by some intervention of luck or fate).

The question as to what these future docs should be learning is not an easy one. But the bases and basics of IC, it’s symptoms and signs, treatments and testing should be studied. For it is only with education and knowledge that IC research and diagnosis can be furthered, and it’s shackles to the past teachings abominated.

And in my mind I couldn’t help but think, girl, you are not finished your studies yet, but by the time you (and your classmates) toss that cap in the air, I deeply hope that you will not ask, “What’s that?” the next time someone mentions Interstitial Cystitis to you.