Interstitial Cystitis Advice

By Jessica Cangiano

Imagine that you wake up and are alone on a deserted island. You have absolutely no idea how you got there. On this island there are certain foods that can seriously harm you and certain foods that are safe. Imagine that a strange bug bites you in the night and now you have to go to the bathroom and relieve yourself fifty times day. Pretend that while you were foraging for safe foods you fell upon a log and hit your pelvis, now it hurts every moment of the day. Your muscles are exhausted from working all day just to survive; they twitch and spasm constantly. Fear and pain keep you awake almost all night. You are a thousand miles from civilization so you try everything you can think up to bring yourself some relief but there are no medicines on this island to help you. You are desperate to be heard so you talk out loud, but nobody can hear you, and you think to yourself, have I gone insane? Will my life ever be the same again? What on earth is wrong with my body? Will my life ever be "normal" again?

This is a hypothetical situation, but it mirrors the way that many with IC feel when they are initially developing the condition. IC affects the bladder, and somehow manages to weaken the natural defense system of our body against irritants in our own urine. It damages the lining of our bladders and may even cause small ulcers inside of the bladder, which are known as Hunner’s ulcers. This occurs in about 10% of IC cases, and typically means that the patient’s bladder capacity is severely shrunken as a result of the bladder stiffening and hardening.

The healthy bladder is an amazing organ; it removes the vast majority of excess liquid from our body (liquid is also lost through things such as sweat, tears, and bowel movements) and can hold a large quantity of liquid before it needs to be emptied. You don’t have to think about voiding (peeing): this occurs naturally, perhaps seven or eight times a day, rarely more unless you’ve been eating or drinking a lot. Voiding doesn’t hurt a healthy bladder despite the high number of acids and chemicals it may contain. You simply go to the bathroom and that’s that, a few moments out of your day.

IC changes everything. For most patients urinary urgency and frequency are two hallmark symptoms, commonly over-lapping one another. Suddenly you are voiding 30, 50, 70+ times a day. Not only during the day, but you may find that at night you are waking to void continually, sleep is increasingly difficult. You may “wake up” and feel sick (nauseous) from the almost insomnia like night you just endured. On top of that your urine burns like acid, like lemon juice on an open wound, as you pass it through your urethra. Often that burning sensation extends to the flesh of your vulvar area - it’s searing pain.

A healthy bladder feels empty once you have voided. Chances are it will be a number of hours before the need to void becomes intense again; you go about your life and do not think about your bladder. With IC, many patients feel as though no matter how often they void, their bladder is never empty. They push and push, attempting to squeeze out every little drop but nothing makes that feeling disappear. And, most likely, unbeknownst to them, they are potentially damaging their bladders and pelvic muscles further by straining to urinate. So there you are, feeling like you could void every second; actual trips to the bathroom are made when this sensation is heightened. Think of one of those games at the fair, where people take a hammer, swing it hard onto an object or surface, and depending on how much force they exude, a marker and/or bell sounds, indicating their strength. Voiding with IC is a little like that, in the sense that suddenly you can have the urge to void come out of nowhere. It might be strong or weak, but never-the-less you can feel it.

Whether consciously or subconsciously, you’ve realized that if something goes into your body it has to leave your body at some point, so you decrease the amount of fluids you take into your system. Who on earth could blame you? Because you are voiding more often and taking in smaller than usual amounts of liquid, you are likely only voiding tiny quantities of urine, perhaps nothing more than a teaspoon at time; half a cup if you are fortunate. The skin around your vulva and urethral opening may be sore from continually being cleaned (wiped); even the softest toilet paper can’t help you any more.

The oddest feeling occurs in your body; you feel as though there is a humongous weight pressing on your bladder, if not your whole pelvic and lower abdominal area. You loosen your belt, change clothes, even wear nothing at all, but the sensation still persists. It’s constant, un-relentless and powerful. For some, voiding brings a short respite from this sensation, for other it is ever present.

You’re tired, physically and mentally exhausted; you know that something is seriously wrong. Perhaps you think it’s a bladder infection (UTI) or a yeast infection without the classic signs. Due to the pain level you might even wonder if you have some form of cancer or tumour in your bladder.

This is IC, it sounds horribly bleak, and I won’t sugar-coat it, at times it can be. But the wonderful thing is that you are not going to die as a result of IC, though sadly for some, their symptoms will escalate to a level where thoughts of suicide or actually ending their own lives become a tragic reality.

If you read the paragraphs above to most people they would place a hand over their crotches and say a silent thanks that they aren’t enduring these symptoms. But for the IC patient this is reality, brutal as it may be. Now, granted not everyone with IC initially starts off with, or ever develops, such intense symptoms. For some IC is annoying but not unbearable. Not the case though for many others, for whom the onset of IC is swift, for some literally overnight or over the course of a few days.

So you find yourself wondering what on earth brought on these symptoms-was it a virus or an infection? An STD? Something you did, ate or put into your body (such as medication or drugs)?

Some IC patients can tell you exactly what occurred in their lives before IC began, for others it’s a huge mystery with not a clue in sight. Some patients develop IC following a bladder infection or series of infections, for others it is post surgical. The question of whether IC could even be passed through sexual contact has even been raised, since for some IC patients the onset of IC occurred following a sexual encounter. It’s worth noting though, that thus far there is absolutely no evidence to support the idea that IC could be transmitted or developed through intercourse (of any form), as it appears in children and other people who still have their virginity.

Medical science does not know the exact cause of IC yet. There are many theories, some probable, others completely off the wall, but either way no idea is so absurd it couldn’t garner researching. Remember, people thought the world was flat for thousands of years. We don’t know something is wrong/incorrect until there is proof to the contrary. Not knowing the cause makes it increasingly more difficult to treat an ailment; IC is no exception. Most modern IC treatments available look to halt or reverse the visible (or “felt”) symptoms of IC, such as a noticeable degree in bladder capacity, frequent voiding, a damaged bladder lining (seen through cystoscopy/ hydrodistension), and pelvic floor muscular problems. The first line of defense is usually oral medications, ranging from Elmiron (Pentosan polysulfate sodium) which aims to replete defects/damages in the glycosaminoglycan layer of the bladder to antihistamines, like Hydroxyzine (brand names like Atarax and Vistaril) thought to combat the excessive mast cell production which occurs in the bladder of a large percentage of IC patients. Several other forms of oral medication are also used including antidepressants (used for reasons other than treating depression itself), antispasmodics, anticholinergic agents (such as Detrol), calcium channel blockers, anti-inflammatories, and L-argine. Sometimes more than one medication will be combined. Common combination are Elmiron and Hydroxyzine or Elmiron and an antidepressant such as Elavil.

If no positive results have occurred from oral medication, or if the treating physician(s) see fit in conjunction with oral medications or as a singular form of treatment, the next most likely form of treatment for IC is bladder hydrodistension and/or instilling medication directly into the bladder. The most readily tried bladder instillation is known as DMSO (Dimethyl sulfoxide) that provides several functions including anti-inflammatory properties and like Elmiron a “synthetic” layer to coat and ideally help to reconstruct the damaged bladder lining. Other medications and treatments can also be administered directly into the bladder, though some patients are unable to handle the necessary catheterizing required for this treatment due to pain factors (often in the urethra). Treatments vary from patient to patient, but if positive results are being seen, a patient may well continue on instillations for a number of consecutive weeks or even months at a time.

In truly severe and exceptional cases, typically when the bladder has greatly diminished in size, and pain is a debilitating factor, the IC patient may face the possibility of surgical action in order to attempt to gain some form of relief. No one surgery is guaranteed to help or “cure” IC. The options available include removing the bladder entirely and creating an “artificial” bladder from a portion of the patient’s intestine, suprtrigonal cystoplasty (almost all but the base of the bladder is removed, a piece of intestine is attached instead and fashioned into a new surrogate bladder). And then there is the option of creating an Ileal conduct, a procedure in which the ureters are separated from the kidneys and connected to a small section of intestine called the ileum. One end of the of the intestine is sewn (stitched) closed, the other is formed into a stoma through which urine will then drain in to a collection bag, which s emptied by the patient several times daily. Of all the types (forms) of urinary diversion (such as altering the natural structure of the bladder or removing it) the Ileal conduct typically has the fewest number of complications

Two other lesser-used techniques are laser photoradition of Hunner’s ulcers and Sacral nerve stimulation (neurostimulation), via devices somewhat like a pacemaker. A wire is positioned in the sacrum (lower back) that produces constant electrical stimulation from a pacemaker-like device. The Interstim device is the most common variety of neurostimulation, and while it provides help for some patients, it is not without it’s risks and side effects, and is a relatively new treatment in the IC field.

Of course before treatment can commence, a diagnosis of IC must first be reached. One would logically think that if a patient arrived in a doctor’s office and listed the symptoms found in most IC cases, they would receive immediate medical attention and priority, have tests run as soon as possible and a diagnosis made STAT. To be fair, there are some fortunate patients for whom this is the case, and I am honestly so happy for them, however…sadly for a larger percentage this is far from the case. Some patients are hesitant to see a doctor right away. If they have a history of bladder infections (UTIs) they may think it is just another one and perhaps try to treat themselves, such as with antibiotics they have on hand already or by drinking large quantities of cranberry juice (please note, cranberry juice/products is/are extremely acidic and unless your bladder can handle virtually any food, try to avoid it at all costs). Others may put it off, believing it will clear up shortly. For some the initial symptoms do not come on too strongly and so they just “live with it”, I hate to say this but especially women. Why? A lot of women know that going to the doctor is not always (initially) helpful (especially if they already have had problems getting a proper diagnosis for other ailments in the past), or because they are too busy, or perhaps scared of the outcome (think of the ostrich with his head in the sand analogy). And then I think there is a percentage which is often over looked, those who live in countries where you pay for your health care service, and who sadly cannot afford, to see a doctor or pay for a hospital stay and/or lab work.

Most people however do at least attempt to see their doctor, and for a variety of reasons it seems the first doctor they see rarely takes them seriously or points them in the direction of further, more appropriate medical help. And so with a long list of serious symptoms these patients persevere, it is not uncommon for IC patients to see more than 10 doctors, in spite of the fact that even general practitioners learn about IC in medical school. Some patients are amazingly told it’s all in their head or caused by stress, and while stress can aggravate IC symptoms, it is by absolutely no means the root cause of IC. Some IC patient’s watch their lives literally fall apart in between trips to the washroom. The longer a person suffers without a diagnosis the more concerned, anxious, scared, upset, etc they stand to (rightfully) become.

For many it takes numerous months if not years to get a real, formal diagnosis. That is simply not acceptable. In short, it is often an extremely difficult journey to reach a diagnosis of Interstitial Cystitis. Once that journey has led to its destination one realizes there is still infinite miles ahead of them. A great number of factors exist in your life now that never did before, including treatments, life style changes, doctor’s appointments, medications, alternative therapies (biofeedback and acupuncture are popular “non-conventional” treatment ideas), stress and so forth.

And if you are like me, you thought to yourself, or asked the doctors, “What’s up down there?” The answer, IC, is not a glamorous one, but it is a real answer and it takes the ridiculous notion that IC could be nothing more than something you dreamed up in your head and manifested in your body, and completely dispels it. What’s up is that you have a serious bladder condition, for some it progresses over time, others stay more or less at the same level of pain/symptoms as they initially developed, and others still go into permanent or short term remission, sometimes for no explicable reason or thanks to the fact that they found a treatment which works for them. As I mentioned earlier, since IC has no known cause it’s treatment is often hit and miss. Some find a “cure”, for others something that helps, be it a little or a lot, and others are still looking for the right treatment, still suffering every day with IC.

IC changes you, in more ways than just the affects it has on your bladder/pelvic area, and it suddenly makes you more aware of your own body. You realize that voiding (peeing) was something you took for granted (if you also have IBS too you understand when I say you took all trips to the washroom for granted). You see that you may not have been so concerned about how the foods you put into your body affected you. You didn’t have to worry about driving to work or going on a date, concerned to leave the house if you didn’t have a sure-fire route to a bathroom. Sexual activity was not painful or impossible as it is for many with IC (and other chronic pelvic/vulvar pain conditions). IC can exhaust you, drain you, beat you up inside, and make huge changes in your life and way of living. Looking towards the future, it is positive to know that while it is grossly under cared for and cared about, IC is being researched. Possible treatment options are being developed and tested, doctors are growing more and more educated about IC, and patients are taking a bigger stance in their own defense. Though, and I know this personally, even though the next day, let alone the future ahead of you, may seem bleak, it doesn’t have to be completely pitch black. The light is educating yourself, trying treatment options, getting the help and support you need, taking an active role in your own health care and connecting with others who have IC to share your experiences and gain new insight. While it often feels as though you are the imaginary castaway, shunned to your own deserted island, the reality is that others have IC too, hundreds of thousands in North America alone.

There is no simple way to answer what is up down there, but once you know the answer is IC, it makes it much more possible to continue on the journey. Your bladder has changed, that much is true, but you are still you, no matter how much it hurts or how often you are voiding. It took me a while to realize that hard fact, but it’s a beautiful truth, a means to get off that island and come back to the world you once knew; because now you understand survival is possible, and that though it may continue to be difficult/painful/challenging/trying/and full of new ups and downs life does carry on.