Interstitial Cystitis Advice

Quintessentially there are certain symptoms of interstitial cystitis which are found in the vast majority of people who have this complex bladder condition. Just as with many medical ailments, it is standard that a set of symptoms are present in order for a disease/illness to be considered present in a patient. In the world of IC the primary symptoms which are experienced include urinary frequency, urinary urgency, pain (of the bladder and in some people also other areas such as the lower abdomen, pelvic/ suprapubic area, lower back, urethra, perineal area, and in men, in the penis and scrotum), a burning or stinging feeling when you urinate, and pain which is associated with the act of having sex (during love making, afterwards, or both). In the following article we'll further describe each of these respective IC symptoms, as well as look at others which occur in some, but not all, cases of interstitial cystitis.

Firstly, it is important to point out that several medical conditions can present symptoms which are very similar to - and in a few cases almost indistinguishable from (based on a verbal explanation of a patient's symptoms alone) - IC itself. Perhaps the closest "symptom cousin condition" to IC is a urinary tract or bladder infection (UTI). However, the key factor which sets IC apart from a UTI is that an infection which is caused by bacteria, whereas IC has not been found to conclusively be linked to any type of bacterial agent (and as it logically follows, in the vast majority of cases, people do not find that their IC improves at all when they take antibiotic medication).

Upon the initial development of IC, many patients understandably believe that they are suffering from a bladder infection (perhaps even more so for those ICers with a past history of re-occurring or chronic UTIs) and usually see one or more doctors in the hope of having a UTI diagnosed and subsequent antibacterial (antibiotic) medication prescribed for their suspected infection. In reality however, IC itself does show up as a bacterial infection when urine tests are carried out, and as such, these types of tests come back negative for an infection (do note that it is possible to have IC and a UTI at the same time). Some people find that UTIs cause them more frequency than IC does, or that it causes them to have blood in their urine more easily. Neither of these factors are enough though to say that a person has a UTI and not IC, as frequency is a hallmark symptom of IC, and in some cases ICers (who are not suffering from any type of overlapping kidney or urinary tract infection) also report having blood in their urine (theoretically this may be the result of having an incredibly raw and injured inner bladder lining, which is known as the bladder's glycosaminoglycan or "GAG" layer). If a UTI test comes back negative some doctors will still prescribe antibiotic medications (which makes little to no sense in all actuality), perhaps because they think that a slight infection is present and that it's just not showing up in their tests. Unfortunately for many with IC who have found themselves in this situation, not only do the antibiotics do nothing to help their IC symptoms, but some people also feel that these drugs ultimately increase their IC symptoms and further lessen the health of their bladder.

If a patient does not test positive for a UTI, it is wise that the doctor (and certainly the patient if he or she is already aware of what the medical condition interstitial cystitis is) either carry out further testing on their own or that they refer the patient to a urologist or gynourologist (a gynaecologist who also specializes in areas pertaining to the urinary system). If you are seeing a doctor who does not appear to want to help you further look into the root cause of your inexplicable bladder symptoms, it may be worth considering getting a second opinion or finding a new doctor (GP) entirely. The sad, stark reality is that for many of us with this perplexing condition, despite the seemingly obvious fact that if someone tests negative for a UTI, IC is a very probably condition to investigate next, we often see many (many!) doctors and specialists, undergo scores of tests/surgeries and continue to suffer needlessly before we are diagnosed as actually having interstitial cystitis.

However, simply because a person who tests negative for the presence of a UTI this does not mean that she or he actually has IC. There are several other solid medical reasons why a person can experience IC-like symptoms or other urinary related problems. It is also a good idea to keep in mind that a patient can also have IC plus any number of other bladder related medical problems, which can make a formal diagnosis of any one condition - let alone multiples - all the more difficult. Some of the conditions which can exhibit similar symptoms to IC (and for which IC is sometimes misdiagnosed as being) include:



-Infection (vaginal, urinary tract, lower urinary tract, bladder, prostate, etc)

-Bladder cancer (please take note that there is absolutely no proof that the presence of IC itself puts a person at greater risk of developing bladder - or any other type of – cancer)

-Sexually transmitted diseases - namely chlamydia

-Eosinophilic cystitis (a condition that presents very similar symptoms to IC, but for which - unlike with IC - the root cause in an individual is sometimes able to be determined; causes can include radiation treatment, chemotherapy, allergies, and a rare blood condition called hypereosinophilia - a bladder biopsy is probably the most reliable way of determinging if EC is present )

-Tuberculous cystitis

-Kidney stones

-Bladder stones

-Certain neurological conditions (for example, people with Multiple Sclerosis commonly experience an array of bladder related issues)

-Endometriosis (of the bladder or other areas in the reproductive area and/or pelvic cavity of a woman)

-Chronic bacterial prostatitis (in men)

-Nonbacterial prostatitis (in men)

-Benign Prostate Hyperplasia (in men)

-Vulvodynia (a condition which has occasionally been referred to as "IC of the vulva", in which a woman experiences vulvar and sometimes vaginal symptoms such as pain, sensitivity to touch, redness, itching, tenderness, swelling, pain with sex, pain when urine or other substances come in contact with the affected area, and other problematic symptoms)

-Overactive bladder syndrome (a problem with the bladder's detrusor muscle can cause spasming which results in the frequent and often very often urgent need to urinate, failure to do so in a short period of time may result in loss of bladder control)

-Pelvic floor muscle problems and pelvic floor dysfunction

-Incontinence (the involuntary loss of urine)

-Injury (such as that sustained during an automobile or horseback riding accident to the spine, tail bone or pelvis - in such cases there may be neurological factors at work)

-Urethral problems/urethritis/urethral syndrome (some patients and people within the medical community alike feel that so-called "urethral syndromes" may in fact be another type of manifestation of IC. However it is possible to experience problems in your urethra and have a seemingly healthy bladder)

-Trigonitis (as with certain other possible IC-like conditions such as non-bacterial prostatitis and urethral syndrome, there is debate as to whether trigonitis maybe another manifestation of IC itself. Generally trigonitis is defined as redness/inflammation and sometimes accompanying pain and an almost bumpy looking surface, stemming from the area of the bladder called the "trigone" which connects that bladder to the ureters and urethra - in some cases of trigonitis legions are present)

-Bladder problems arising as a side effect from a prescription or over-the-counter (OTC) medication (usually the associated symptoms stop shortly after a person ceases to take the offending medication)



As well certain medical conditions which are commonly seen amongst the general IC population (in other words people with IC often have a higher rate of developing these conditions than the general public), and which like IC, are frequently of an unknown origin - may also bring about bladder symptoms that can mirror some of those symptoms experienced with IC. Fibromyalgia (FMS), irritable bowl syndrome (IBS), vulvodynia (as mentioned above) and a very similar condition called vulvar vestibulitis, other gastrointestinal problems, and even certain types of allergies and chemical sensitivities have all seen cases of patients who reported unusual or inexplicable bladder symptoms.

If a person does have interstitial cystitis (diagnosed or undiagnosed) they may have many different types of symptoms, and may also find that the severity of these symptoms can wax and wane depending on many factors (medication, diet, hormones, stress, sleep, physical activity, overlapping medical conditions, etc).

Though at one time it was thought that in order for a person to be diagnosed as having IC, their symptoms had to meet a stringent set of guidelines called "NIDDK Diagnositic Criteria for Interstitial Cystitis", this largely restrictive view of what officially classifies as a case of IC, is no longer seen with as much authority as it once was. In turn the NIDDK and other leading urology related organizations and bodies around the world are continually adjusting the diagnostic criteria for IC. Progressive doctors (GPs) and urologists now realize that a person does not have to have all of the main symptoms of IC (or the same symptom severity level or the same internal bladder lining findings upon cystoscopy/hydrodistention) in order to be diagnosed as actually having interstitial cystitis. While debate about just what exactly IC is will likely continue to rage until a cause - or causes - are found for IC, at the current moment, IC is generally defined as being a chronic, non-bacterial bladder condition of unknown origin and which lacks a definitive cure (or cures) and includes a number of ongoing urinary symptoms.

Urinary frequency is a major symptom of IC for most people with this condition. In a broad sort of medical context, frequency is generally defined as having to void (urinate) more than 8-10 times a day. For a great many people with IC, such a low number would seem like a small miracle because they are often struck by such intense frequency that urination takes place anywhere from 10-100 times a day. A generally accepted IC frequency meridian has not been conclusively determined, but a rough estimate would anywhere from 20-40 times per day, including voiding at night (the medical term for night time voiding is "nocturia", and for a lot of people with IC, it becomes a very problematic symptom unto itself).

Many ICers find that flare-ups (times when for whatever reason their daily symptoms take an upwards spike and increase in severity), certain foods/beverages (including, but certainly not limited to, citrus fruits, tomatoes, caffeine, chocolate, cranberries, hot spices, soy, MSG, artificial sweeteners, processed/smoked/cured meats, aged cheeses, soda pop, carbonated beverages, many types of nuts, tropical fruits, coffee, tea, alcohol and vinegar), stress, sexual activity, intense exercise and many other factors can all contribute to their daily level of frequency. Frequency is likely to arise because the inside of an IC bladder (lining) is damaged (and in some cases the over-all size of a person's bladder capacity is diminished as well) resulting in an inability to function and store urine for as long as a healthy bladder is capable of doing so. If you are not sure how often through a given day you urinate, you may find it very helpful for both yourself and your doctor(s), to keep a voiding diary for a week or longer in order to determine how infrequently you really are voiding. (Insert link for voiding diary ICadvice article)

Often coupled with frequency, urinary urgency is another one of the big IC symptom players. While some people feel that frequency and urgency are as entwined as day is to night, others believe that it's possible to have one with out very much of the other. For example a person might find that they have to void about thirty times a day, yet in between those voids they might not feel the need to urinate. Bladder urgency is the sensation that one must use the bathroom and void immediately. And for some ICers, even after they have voided, this feeling persists, making it difficult to go more than a few minutes or half an hour (again, as with all IC symptoms it can vary from person to person) without taking another washroom trip. ICers sometimes find that it is only by the severity of their urgency can they determine just when exactly they really cannot hold it (their urine) any longer. Generally the longer a person feels that need to urgently void, the more bladder related pain they are likely to experience. For some, voiding diminishes this pain, whereas for others it's pretty much a constant factor of their daily lives that not even voiding can dispel.

An unsettling symptom which many ICers experience is the sensation of burning, stinging, or increased (usually urethral, but also bladder and pelvic or other related area) pain when they urinate. The description of these feeling varies a fair bit from patient to patient. Some people feel a slight sort of stabbing sensation, for others it's as though they are passing out battery acid instead of urine. Descriptive words of this symptom have included acidic, hot, burning, fiery, irritating (to the urethral opening and sometimes the surrounding vulvar or penile area), shocking (like little electric jolts), and tingling. While a burning sensation with urination is a classic sign of UTIs (and to a lesser extent yeast infections), many ICers report that they continually experience this type of feeling, even when they do not have any sort of infection. Diet changes (reduction of known bladder irritants), wearing cotton underwear, using mild soaps (as with cotton underwear, some people find that - similar to vulvodynia - their urethra feel better when they are not exposed to harsh dyes, chemicals and additives), and cases where people find treatment options that aid in the reduction of their overall symptoms, are reported as being helpful tools in combating urgency. If you find that your skin is still "burning" after you void, you may want to invest in an inexpensive perianal squirt bottle which is filled with water and squirted onto the surrounding skin after voiding (they're available from some drugstores, medical supply shops and various online sources).

Pain: while everybody experiences IC somewhat differently, it might be a fair assessment to say that across the board, pain is often the most problematic IC symptom for many people. For some, the feeling of pain can be very mild, just a slight sort of discomfort most of the time, for others the pain can be so severe that it leaves them practically bed ridden. A fair number of ICers fall someplace in the middle, but that’s not to say that they do not have times when their IC flares up and their pain also increases a lot (as it can for anyone with interstitial cystitis).

ICers experience the types of pain that we do because (for the vast majority of us) our bladder linings are inflamed (red), damaged, and irritated (by problematic foods, increased levels of mast cells; substances that “leak” through out bladder linings, hormones, stress, etc). Some people with IC have ulcers on their bladder linings called “Hunners ulcers” (this is thought to occur in about ten percent of IC cases), while others have patches of pinpoint bleeding, known as glomerulations (it’s also possible to have both of these things). Both of these scenarios certainly contribute to the tenderness and sensitivity of IC bladders. While we don’t know what exactly caused them to become that way (aka, what causes the development of IC itself), our bladders are very sensitive and prone to being aggravated far more easily that that of a person with a “healthy” (aka illness-free) bladder.

When talking about IC and pain, one is usually referring to pain which seems to radiate outward from the bladder and/or urethra (it can be hard to distinguish between bladder pain and urethral pain at times) and the pelvis (sometimes this pelvic pain can be caused by the presence of an overlapping condition called pelvic floor dysfunction, or by endometriosis). There is no set way of describing IC pain because it seems to be very specific to each individual (as well, it has been noted that IC pain is both very persistent and extremely severe, some sources describe IC pain as being equal to that of advanced stage bladder cancer). One person may describe their pain as feeling like a very heavy weigh is continually resting on their lower abdomen, another might describe sharp continual shooting pains which radiate all the way down their legs, another still may find that it seems like everything between their bellybutton to their knees hurts with the most pain coming from the bladder itself. For some ICers pain primarily occurs only when they need to void, or if they eat a food which aggravates their bladders. Others still might only feel pain after having sex (the subject of Interstitial Cystitis pain and sex is virtually a sub-symptom in and of itself) or during their monthly period. An small number of ICers have even reported that they have (virtually) no IC associated pain, but that it’s other IC symptoms which cause them the most trouble. Yet again, we are each so very different and we each experience IC pain in our own unique way.

Words used to describe the pain of interstitial cystitis



-mild
-moderate
-strong/powerful
-nauseating
-severe
-unbearable
-over all sense of discomfort
-tender/raw
-sharp
-cramping
-penetrating
-gnawing
-aching
-throbbing
-piercing
-jolting
-constant
-cutting/stabbing/slashing
(feeling like someone is cutting you with a knife or razor blades)
-pressure/heaviness (weight)
-crushed glass (being ground into your bladder)
-fire/heat
-pulsating/tingling/electric shocks



Locations on the body where IC related pain can occur



-bladder
-urethra
-vagina
-lower back/tail bone
-thighs/radiating down their legs
-perineum (the area between the gentiles and the anus)
-rectum
-pelvis/pelvic floor
-lower abdomen
-penis/scrotum/testicles



When describing the pain and severity of IC, some people say that it is the most intense pain that they have ever known. For anyone living with ongoing pain, they may find that it begins to have a huge impact on not only how they feel and what they are able to do on a daily basis (tired, rundown, loss of appetite, problems sleeping, problems concentrating, unable to participate in their usual activities, etc). There is absolutely nothing wrong with saying that you are in pain, and with asking for help in order to treat or manage that pain (from your doctors, at the hospital, from family and friends who can help you at home, and so on). IC is a brutal condition for many people and its pain is no less valid than that of any other chronic condition or disease which inflicts agony onto those who suffer from it. Because the topic of IC and its respective pain is such a diverse and highly intricate one, instead of going into great length about it in this article, you can read more about it in the ICadvice article, “Pain and IC: a simple look at a complex issue”. As well, both the ICA and the ICN provide extensive information about IC related pain, and further information can be found from other online sources, in books (such as “The Interstitial Cystitis Survival Guide” by Dr. Robert Moldwin), and from your healthcare team.



In addition to the main symptoms (pain, urgency, frequency and painful urination) which are commonly experienced by ICers, there are also several other symptoms which have been noted by patients and researchers. It’s important to point out that sometimes people with IC have other related overlapping medical conditions (such as fibromyalgia, irritable bowel syndrome, pelvic floor dysfunction, lower back pain, chronic fatigue syndrome, vulvodynia, candida, etc) which can cause their own set of symptoms that could be understandably accidentally mistake as being a result of IC itself. Sometimes a person with multiple medical conditions will find it extremely hard to distinguish just what condition exactly is causing pain or fatigue; sometimes it might very well be the result of more than one ailment and each condition will need to be adequately addressed in order for the symptom(s) to lessen or cease .

ICers have noted that they often feel like their lower abdomens (stomachs) are very bloated (swollen/distended), painful and tender. Women with IC who experience this problematic and very painful symptom sometimes compare their appearance of their swollen bellies to that of a person who is pregnant. This symptom is often very sporadic, and its exact cause is anything but properly understood, however you can certainly delve into it further topic by reading about it in the article Bloated stomach, tender tummy? It could be IC belly. Generally it is a good idea to avoid garments of clothing that are tight on your stomach (waistbands, underwear, belts, nylons), as this seems to bring on IC belly for some patients (overall it’s a smart move to make, as other IC symptoms can be bothered by tight or restrictive clothing as well). Eating smaller sized meals (for example five meals a day instead of three), using antacids or Prelief with problematic foods, sitting in a comfortable position (this can be easier said than done if you have IC), using the bathroom whenever the need arises, and avoiding activities which put pressure on your stomach may also be steps that can help to reduce the occurrence of a swollen, sore belly.

Of considerable and important interest is the fact that a great many women of childbearing age report that their experience a noticeable shift in their IC symptoms through out of the course of their monthly menstrual cycle, often with a worsening – or much more rarely a decrease of – their symptoms during their menstruation. Likewise women also note that their IC symptoms can fluctuate when they are going through the stages of menopause.

The intricate role of hormones and IC is one which deserves a great deal more research, as so little is concretely known at this time (hormones and IC should be studied in both men and women). What science can tell us is that ICers are not alone in having their symptoms change/worse through out the course of their monthly cycles. Conditions with noted simulates to interstitial cystitis (often called “related conditions” such ailments are also often of an unknown cause) such as IBS, Lupus, vulvodynia, endometriosis, and Fibromyalgia are but a few illnesses that can fluctuate with a person’s hormone levels through out the month – and as we age (pubery, child bearing years, menopauses). Interestingly, many women with IC have noted that almost irregardless of if their symptoms change during their menstruation, they often experience a change and/or spike in their symptoms a few days before the actual monthly bleeding begins. In 2005 the results of a study carried out by Powell-Boone, Ness, Cannon et al entitled “Menstrual cycle affects bladder pain sensation in subjects with interstitial cystitis”, concluded that quote, “These findings are consistent with clinical lore that suggests a perimenstrual flare in pain in subjects with IC. To our knowledge it also demonstrates for the first time a menstrual cycle effect on bladder sensory function in subjects with IC. This suggests a potential role of gonadal hormones on bladder sensory processing and, therefore, a potential role for hormonal modulation as a therapeutic modality in this patient population”. Undoubtedly, so long as the cause of IC eludes the medical world, much more research into the area of IC and hormones (as either a cause, contributing factor or element of symptom provocation) will need to be carried out. For the sheer number of woman alone who develop IC compared to men (most stats list the ratio between the sexes as 90:10), seems support the role of hormonal (estrogen, progesterone, testosterone, etc) influence on IC.

There are other (somewhat lesser known) symptoms as well which some people with IC experience, these can include:



-Painful intercourse (as mentioned above in the section on IC pain), which is clinically known as dyspareunia is actually a fairly common and often very severe problem for ICers of both genders. For some people the pain begins with sexual arousal, for others it happens with genital stimulation, penetration, orgasm, or the pain may be delayed and occur as much as 48 hours after having sex. Painful sex as a result of IC is reported amongst both men and women, and its severity can be enough to cause some people to abstain entirely from certain types of sexual activity. For more on this highly important area of life with IC, please see the article Sex and IC, the real deal.

-Similar to pain, many ICers report a sense of bladder pressure or fullness that can range from mild to very severe (touch or stimuli of the area surrounding their bladder/lower abdomen can be excruciating). This symptom may have similar causes to “IC belly” such as the result of our bladders being inflamed and hypersensitive, as well as being tied to how full (of urine) our bladders are at any given moment. (The sensation of pelvic pressure is also seen amongst patients with UTIs and women with conditions such as uterine fibroids, and thusly any sudden change in the sensation of pressure that you have should be checked out by your doctor.)

-Weak/slow urine flow is something which is seen noted amongst ICers. This means that when you urinate, there seems to be less force than usual (think of a slowly running faucet instead of a powerful, forceful one) – involuntary stopping and starting of the urine stream is also reported. Possible causes for a weak or irregular urine stream include pelvic floor muscle problems and voiding of continually small amounts of urine (a common occurrence for ICers). Conditions (including prostate problems) can also cause a weak urine stream, and so it is best to speak to your doctor about this symptom, especially if it comes around suddenly.

-Blood in your urine. Any time you see blood in your urine this is cause for alarm. Generally IC is not associated with bloody (or pus) filled urine, a symptom which is seen more often with bacterial infections and kidney stones (foul or odd [bad] smelling urine is also not something which is attributed to IC as a general rule, and may indicate the presence of a bacterial infection, yeast infection or STD). However, sometimes an ICer will have blood in their urine despite having no presence of infection or renal problems. In which case, it has been hypothesized that the bladder lining and/or the urethra have become so inflamed (possibly ulcerated) and irritated that they have begun to bleed. Blood in your urine can sometimes also occur after you’ve had a catheter in place, or any other instrument which entered your urethra/bladder. If you see blood when you void (and it is clearly not menstrual blood), immediately contact your doctor so that you can get to the root cause, especially if there is also an accompanying fever, chills, or other flu-like symptoms.

-Bowel problems are so common amongst ICers, that the presence of gastrointestinal related symptoms are sometimes used as one symptom (amongst many) that doctors check for when talking to a patient about that person’s bladder symptoms. While many ICers have irritable bowel syndrome (a condition which causes changes in bowel habits, intense abdominal pain, cramping, gas, and in some people, colon/GI related food sensitivities), others are prone to constipation (certain medications can increase your risk of constipation), and others still develop conditions such as Chron’s Disease, inflammatory bowel disease, ulcerative colitis and diverticulitis. While IC alone has not really been indicated as a possible cause of IBS (or vice versa), the occurrence of both IC and IBS is the same patient is fairly common. And interestingly, while many people have IBS and do not have IC, there seems to be a higher rate amongst people with IC to develop IBS either before or after the onset of their IC.)



When assessing a person’s probability of having IC (based on their symptoms and diagnostic testing), it is a good idea for the physician to take into account a person’s entire medical history, and to watch for the presence of any medical conditions which have been linked to IC patients (several of which have also been – like IC - linked to mast cell interaction and inflammation as well as neurological factors). Because certain conditions that are associated with IC are similar in many respects to this complex bladder disease (ie, they do not have a conclusively known cause, they display similarities like inflammation, chronic pain, painful intercourse, etc), if a person already has a condition (or conditions) such as IBS, inflammatory bowel problems, fibromyalgia, vulvodynia, endometriosis, candida, multiple chemical sensitivity, rheumatoid arthritis, temporomandibular joint disease, allergies, sensitive skin (ICers commonly report having very sensitive skin which is prone to irritation and hive rashes), migraine headaches, asthma, sjogren's syndrome, lupus, Myofascial Pain Syndrome, chronic fatigue syndrome or mitral valve prolapse, it may be an important sign that the patient’s bladder syndromes could be interstitial cystitis.

If you are reading this article and have not been formally diagnosed with IC, it’s important to reminder yourself that you may not have IC, there are other possible causes as we’ve briefly delved into in the above article. If however you do have IC, it’s also wise to never forget that your own symptoms may change (for better or worse), they may go into remission, or they might remain much the same (at least until you are able to find a treatment option which can bring your symptoms some much needed relief). While a cure for IC has yet to be discovered, it may help you to know that there are treatment options available which may bring you relief from some or all of your IC symptoms (oral medications, bladder instillations, supplements, following an IC friendly diet, stress reduction, alternative medicine, TENS machine, heat or cold therapy, biofeedback, physiotherapy, etc). If one symptom clearly outweighs the others in terms of it’s severity for you, speak with your urologist and discuss what types of medications are worth trying in order to target that specific symptom – while at the same continuing to try and treat the bigger scope of your interstitial cystitis. Remember that your symptoms are valid, they are real, and chances are you are certainly not alone in feeling them. IC is an intricate, only partially understood medical condition and each one us has a proverbial fingerprint of own our unique bladder symptoms.