Living With Interstitial Cystitis

Interstitial Cystitis is a very painful, debilitating chronic illness that unfortunately, there is no cure and the cause cannot be found as of this time.  I believe that Fibromyalgia, Chronic Fatigue, and IC Disease are all manifestations of the same illness.  Affecting some of us with all three, while others may be only affected with 1 or 2 of these illnesses. 

My urologist and I believe I have always had IC disease, but I was diagnosed a little over 2 years ago.  I was sent to have a stress test for my heart and after the stress test, my symptoms became severe.  I could not hardly walk, the pain and pressure in my lower abdomen and pelvic region were so severe, I would be doubled over much of the time, I had to ride in the electric carts at the grocery store, I would urinate up to 60 times a day, the pain was totally unbearable and no amount of pain medication would relieve the pain, I was also bleeding daily from my vagina. 

I was in really bad shape and the urologist’s office, no matter how much I called and begged, would not squeeze me in any earlier than my scheduled visit, which was almost 2 months away.  WHAT I KNOW NOW THAT I DO DIFFERENTLY…IF YOU DO NOT GET ANYWHERE WITH THE OFFICE STAFF AND YOU REALLY NEED TO SEE THE DOCTOR, ASK TO HAVE THE DOCTOR CALL YOU AND SPEAK TO YOU PERSONALLY!  IF I WOULD HAVE DONE THIS, MY UROLOGIST WOULD HAVE GOTTEN ME IN EARLIER.  HE WOULD HAVE MADE SURE OF IT.

In less than 2 months time, I was in the ER twice for my severe symptoms, and no one could help me.  I would hear, “Well, it sounds like you have a severe Urinary Tract or bladder infection, but your urine doesn’t show any infection”.  Off I would be sent home – just as miserable as when I went in. 

I urge everyone to not give up on finding help!  There are doctors out there who do believe in these diseases, you just have to not give up and stay strong!  You know you are sick and giving up should not even be a thought. 

It has taken me almost 16 years to find help and if you truly want to be well, then you will do what is necessary to stay committed for your own well being. 

WHAT IS INTERSTITIAL CYSTITIS (IC DISEASE)?

IC is a chronic, and very often severe, inflammation of the bladder wall.  The cause is unknown.  Primary symptoms:  urinary frequency, urgency, and for some severe lower abdominal or perineal pain.  IC patients will rarely test positive for infection when a urinalysis and urine cultures are tested.  There is no definitive diagnostic test for IC.  A diagnosis is usually based upon a patient’s symptoms, a cystoscopy, (examination of the bladder while under anesthesia), and exclusion of other bladder diseases.  Urologists will examine the bladder wall for signs of IC during the cystoscopy looking for small hemorrhages (glomerulations) and/or large, Hunner’s Ulcers.  IC patients are classified into two categories:

1.  The majority of patients are diagnosed with “early non-ulcerative” IC, identified by glomerulations during cystoscopy.

2.  An estimated 5% to 10% of IC patients are believed to have the second, more severe “classic ulcerative” IC, identified by the presence of Hunner’s Ulcers and glomerulations during cystoscopy.  These patients may have reduced bladder capacities and stiffened bladder walls.

Although some sectors of the medical community still believe that IC does not exist, researchers and physicians now are aggressively supporting the IC cause to encourage compassionate patient treatment. 

NIH (NATIONAL INSTITUTE OF HEALTH)/NIDDK DIAGNOSTIC CRITERIA FOR IC

To be diagnosed with IC for research study purposes, patients must have either glomerulations or Hunners Ulcers on cystoscopic examination, must have either bladder pain or urinary urgency (greater than 8 times per day).

The presence of any one of the criteria below will exclude the diagnosis of IC for research study purposes:

• Bladder capacity greater than 350 ml on awake
• The demonstration of involuntary bladder contractions
• Duration of symptoms less than 9 months
• Absence of nocturia (frequent urination during sleeping, or night time hours)
• Frequency of less than 8 times a day
• A diagnosis of bacterial cystitis within a 3 month period
• Bladder or lower urethral calculi
• Active genital herpes
• Uterine, cervical, vaginal or urethral cancer
• Any type of chemical cystitis
• Benign or malignant bladder tumors (urologist will also check for these during the cystocopy)
• Vaginitis
• Age less than 18 years old

Studies have found that:

• The average onset for IC is 40 years, with 25% of patients under the age of 30.
• Up to 50% of patients will experience a spontaneous remission, most likely unrelated to treatment, with a duration ranging from 1 to 80 months.
• Patients with IC are 10 to 12 times more likely to report childhood bladder problems.
• Patients with IC are twice as likely to report a history of urinary tract infection; however, over half of all IC patients report fewer than one such infection per year before the onset of IC.
• 50% of IC patients have pain while riding in a car.
• 63% of IC patients are unable to work full time.
• IC patients have suicidal thoughts 3 – 4 times above the national average.
• The quality of life of IC patients is worse than patients experiencing chronic renal failure and undergoing dialysis.

FOODS, DRINKS, AND OTHER BLADDER IRRITANTS TO AVOID WITH IC

• Caffeine
• Sodas or anything with carbonation
• Chocolate
• Anything spicy
• Tomato products (pizza sauce, spaghetti sauce, etc.)
• Nicotine
• Cranberry Juice and other cranberry products
• Multi-Vitamins (anything with Vitamin C is a bladder irritant).  If you are taking vitamins for another medical condition, stop for a short time just to see if these do relieve some bladder symptoms.
• Oranges, grapefruits, any fruit with citric acid
• Bubble baths, soaps, that are not botanically based, or that have fragrance.

Everyone is different and there may be other foods besides these that irritate your bladder, and some of the ones listed above may not.  You will need to do an elimination diet to decide which are you main irritants.  The following foods have also been big irritants for me:

• Onions
• Spices (oregano, Italian seasoning)
• Green Peppers
• Tea
• Water that is not spring water or distilled

TREATMENTS FOR IC

There are several treatments currently for IC.  Some patients respond to these, some don’t respond to any treatment.  It depends on the severity. Personally, I have been trying to go for a more natural approach for treatment and I only currently take one prescription for IC, just because it does help.  Most of these I have already been through, too:

• Elmiron – Bladder Coating Drug (I have had good results with this)
• Elavil and Tofranil – Anti-depressants that are supposed to be effective in relieving chronic pain by interfering with nerve activity.  ( I did not respond to this treatment)
• Antispasmodics – Drugs that are to calm bladder spasms. (No results with these)
• Urinary Anesthetics (Pyridium) – This is a prescription pain reliever that is excreted into the urine and sooths the bladder lining.  Often prescribed for temporary pain relief after surgery, cystocopy, catherization.  This is not prescribed for long-term use by IC patients, because if built up in the body, can cause harmful side effects.  (This has worked for me, but I won’t take it anymore because of the potential side effects.)
• Bladder Hydrostentions – Bladder distention involves filling the bladder with water (while the patient is under general anesthesia) and letting it expand to a degree that is too painful to achieve while the patient is awake. Often the bladder lining bleeds. Researchers are not sure why distention helps, but some believe that the procedure may increase bladder capacity and interfere with the pain signals transmitted by nerves in the bladder.  (I have had this done twice but only felt better for about 2 – 3 days.  The pain for me after the second time was extreme.)
• TENS/Nerve Stimulation – I haven’t tried this.
• Surgical options – These are only used as a last resort.  I will not have surgery, just because of my weak immune system, it would be very dangerous for me.
• Alternative Therapies – Acupuncture, acupressure, Chinese Herbs, nutritional supplements, marshmallow root, licorice root.  You can get the marshmallow root and licorice root at a local health food store.  The marshmallow root you make into a tea, just add water, no sugar, and it doesn’t have a very strong taste, but it helps.  I have also tried different nutritional supplements that have not irritated my bladder.

I have found over the last year that my IC symptoms have lessened due to the fact that I am receiving treatment at the Fibromyalgia and Fatigue Centers.  This is why I believe these diseases are one and the same, or at least have the same cause.  I will go into the therapies I am using from then on another post!  Please feel free to comment, ask any questions, that you wish!

Disclaimer:  I am not a physician – my opinions and information I write comes from research that I have done and personal experience with these illnesses.