IC Disease

Japanese urologists and researchers have discovered a new diagnostic breakthrough for Interstitial Cystitis patients!  It can be difficult for urologists to make a diagnosis of Interstitial Cystitis and diagnosing the bladder lesions that are a hallmark feature of the illness can also be difficult to do sometimes. 

The Department of Urology, Kyoto City Hospital, Kyoto, Japan, goal was to develop an IC Disease diagnosis method using a cystoscope with a narrow-band imaging (NBI) system that can detect mucosal angiogenic lesions.

The Japanese researchers and doctors have discovered that by using a flexible cystoscope with the NBI system allows them to easily detect the ulcers and lesions that are typically associated with IC Disease.  Here is more information on this new research.

Fifty-two subjects suspected of having IC between October 2006 and June 2007 were included in this study. There were 49 women and three men, ranging in age from 19 through 85 with an average age of 59. First, conventional cystoscopy under spinal anesthesia was performed to examine the ulcerative lesions by a urological specialist. Then, other health care professionals made a separate observation of capillary-rich areas of the superficial layer of the bladder mucosa by cystoscopy with the NBI system.

Among the 52 patients, 37 cases were found to have ulcers by conventional cystoscopy, which were also recognized as capillary-rich brownish areas using the NBI system (100% accuracy); 13 cases were found to have NBI-positive areas without ulcer, which were coincided with those with petechial hemorrhages and glomerulations following subsequent hydrodistention; and two cases of normal mucosa were detected. Furthermore, six cases of bladder cancer (carcinoma in situ) were detected by biopsies that were obtained from the ulcerative lesions positively identified by NBI cystoscopy.

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Please go back and read Part 1 (Celiac Disease:  Overview) and Part 2 (Celiac Disease:  Symptoms).

As I mentioned in Part 1, Celiac Disease can be difficult to diagnose and is often misdiagnosed because the symptoms are similar to several other chronic conditions.  Recently diagnosis rates have begun to increase because doctors are starting to learn more about this misunderstood illness and there are blood tests that can diagnose the illness. 

People with Celiac Disease have higher than normal levels of certain autoantibodies in their blood.  If a doctor suspects Celiac Disease, patients will be tested for high levels of anti-tissue transglutaminase antibodies (tTGA) or anti-endomysium antibodies (EMA). If test results are negative but celiac disease is still suspected, additional blood tests may be needed.

If both the blood test and symptoms point to Celiac Disease, the doctor will more than likely perform a biopsy of the small intestine to confirm the diagnosis.  During the biopsy, the doctor will check for damage to the villi in the small intestine which is what Celiac Disease does - damages the small intestine.  To obtain the tissue sample, the doctor inserts a long, thin tube (an endoscope) through the patient’s mouth and stomach into the small intestine. The doctor then takes the samples using instruments passed through the endoscope.

From what I’ve been told, it is possible for someone to have Celiac Disease but to not test positive for the autoantibodies.  I have talked to Celiac patients who have all of the symptoms but the blood test was negative, yet when they switched to a gluten-free diet their symptoms disappeared.

A family member of mine was diagnosed with IC Disease in 2000, which was three years before my IC diagnosis.  It is not a blood relative of mine, but she is a relative through marriage.  She has also had many back problems over the years and she has additional symptoms that are not usually found in IC patients but are similar to those of Vulvodynia, but much more severe.  Her chiropractor told her her vaginal pain symptoms are coming from back damage but she can’t find a doctor who will admit that this is the case.  My family member has thoroughly researched IC Disease and Vulvodynia but can’t seem to find where some of her symptoms match either illness.

She goes to the restroom every 10 - 15 minutes, but it is not burning pain or pressure as seen in IC patients that makes her have to go that often.  She gets intense, extreme pain that she said feels like a knife.  She can’t stand long enough to wash dishes because the pain gets so bad for her.  When she lies down on her side, the pain will get better.  With IC Disease, the pain doesn’t improve with lying down.  Any ideas what this could be and if it could be something in her back like she and her chiropractor believes?  Her chiropractor told her that it is the area in the lower spine between LR-L5 that would cause the vaginal pain.

Lupus is another chronic disease that there currently is not a cure for. While the illness will never go away (unless a cure is found), symptoms can go into remission and doctors can control the illness with medication. That doesn’t mean that the patient still doesn’t suffer, however.  If a patient is diagnosed early in the disease process this too can help physicians to keep the illness under control. 

If diagnosed early, treatments and medications can help reduce symptoms, reduce inflammation, control pain, and keep serious complications from occurring. According to the Lupus Foundation of America:

For mild cases of lupus, when there is little disease activity and no major organ involved, treatment may be managed by a primary care doctor, such as a pediatrician, for children and teens, a family practitioner, or an internal medicine physician, for adults. However, when lupus is active and the person needs to be watched for complications, he or she should be under the care of a specialist, usually a rheumatologist (a physician specially trained to treat musculoskeletal and joint disease).

If the disease has progressed to where other organs are involved, other specialists will need to be consulted such as a dermatologist for cutaneous lupus (skin disease), a cardiologist for heart disease, a nephrologist for kidney disease, a neurologist for nervous system involvement, and others if necessary.

Tests to Diagnose Lupus
When a doctor suspects a patient has Lupus, certain blood tests are done to see how the patient’s immune system is functioning. Physicians look for evidence of autoantibodies. It takes more than one blood test to diagnose Lupus. There is currently not just one test for Lupus. The tests usually run when Lupus is suspected include:

• Sedimentation rate (ESR) , also reffered to as the “SED” rate, and C-reactive protein (CRP) binding.
• Routine blood tests that can reveal if the patient has anemia, low platelet and low white blood cell counts.
• Serum protein electrophoresis which may reveal increased gammaglobulin and decreased albumin.
• Chemistry panels that can tell if there is kidney involvement, liver function abnormalities, and increased muscle enzymes.

According to the LFA, if Lupus is suspected these tests are also run:

Anti-nuclear antibody test (ANA) to determine if autoantibodies to cell nuclei are present in the blood.
Anti-DNA antibody test to determine if there are antibodies to the genetic material in the cell.
Anti-Sm antibody test to determine if there are antibodies to Sm, which is a ribonucleoprotein found in the cell nucleus.
Serum (blood) complement test to examine the total level of a group of proteins which can be consumed in immune reactions.
Complement proteins C3 and C4 test to examine specific levels.

Irritable Bowel Syndrome is a common disorder that is seen among people who have Interstitial Cystitis, ME/CFS & Fibromyalgia.  For some their IBS is manageable while for others it can be completely devastating and life altering.  I have IBS and over the past several years my symptoms have gradually become worse.  Eating out in restaurants becomes a nightmare for me.  There is something about restaurant food that causes my IBS to react severely.  I have had several close calls where I didn’t think I was going to make it to the bathroom.  The pains I get in my stomach I have often compared to labor pains they can be that severe.  When going out, I can never fully enjoy myself because in the back of my mind I’m always wondering if IBS symptoms are going to hit and that I’m going to be in severe pain.

IBS is considered a bowel disorder that accounts for anywhere from 20% - 40% of visits to gastroenterologists.  The cause is unknown and there is no cure.  Like other chronic illnesses of unknown origin, IBS can be very unpredictable.  One time an IBS patient may suffer from constant diarrhea while the next time their main symptom may be constipation.  Pain levels among patients, as well as triggers, will vary.

Research has shown that approximately two-thirds of IBS patients have abnormally low thresholds for experiencing pain in their bowels. Research has also shown that the muscles of the intestines are over-reactive in many IBS patients, contracting excessively in response to stimuli like food, stress, and pressure. This is the likely cause of the crampy bowel discomfort many IBS patients feel after meals and under stress.

To diagnose IBS, the Rome III Diagnostic Criteria is used by physicians.  This is a a system for diagnosing functional gastrointestinal disorders based on symptoms.

Recurrent abdominal pain or discomfort** at least 3 days per month in the last 3 months associated with 2 or more of the following:

1. Improvement with defecation
2. Onset associated with a change in frequency of stool
3. Onset associated with a change in form (appearance) of stool

* Criteria fulfilled for the last 3 months with symptom onset at least 6 months prior to diagnosis.
** “Discomfort” means an uncomfortable sensation not described as pain.

Other symptoms that are not essential but support the diagnosis of IBS:

* Abnormal stool frequency (greater than 3 bowel movements/day or less than 3 bowel movements/week);
* Abnormal stool form (lumpy/hard or loose/watery stool);
* Abnormal stool passage (straining, urgency, or feeling of incomplete bowel movement);
* Passage of mucus;
* Bloating or feeling of abdominal distension.

Just like ME/CFS and IC Disease, there is not a blood test to diagnose Fibromyalgia.  Like the other illnesses I have discussed on here, it is diagnosed by excluding other illnesses.  Fibromyalgia can also be diagnosed by a doctor determining if the patient has certain tender points on their body that cause a lot of pain. 

This is the American College of Rheumatology 1990 Criteria for the Classification of Fibromyalgia:

Pain is considered widespread when all the following are present in the patient:

• The pain is in both sides of the body.
• The pain is above and below the waist. 
• Pain in the cervical spine, anterior chest, thoracic spine or low back pain must be present.

Pain in 11 of 18 tender point sites on digital palpation
Definition: Pain, on digital palpation, must be present in at least 11 of the following 18 tender point sites:

Occiput (2) - at the suboccipital muscle insertions.

Low cervical (2) - at the anterior aspects of the intertransverse spaces at C5-C7.

Trapezius (2) - at the midpoint of the upper border.

Supraspinatus (2) - at origins, above the scapula spine near the medial border.

Second rib (2) - upper lateral to the second costochondral junction.

Lateral epicondyle (2) - 2 cm distal to the epicondyles.

Gluteal (2) - in upper outer quadrants of buttocks in anterior fold of muscle.

Greater trochanter (2) - posterior to the trochanteric prominence.

Knee (2) - at the medial fat pad proximal to the joint line.
Digital palpation should be performed with an approximate force of 4 kg.

A tender point has to be painful at palpation, not just “tender.”

See the illustration above to see where the tender points are. 

Source: National Fibromyalgia Research Association

Since Interstitial Cystitis is a chronic illness, pain is something that these patients have to live with and learn to deal with for years.  Even though some of the initial symptoms decrease, there is still always some sort of pain involved with IC Disease.  When someone with IC becomes sick and starts to experience the symptoms such as urinary frequency, urgency and pain, the patient often seek multiple specialists to help diagnose and treat their symptoms.

Recently the first American population based study was conducted to find out the prevalence of pelvic surgeries in an established IC population, and the community. Women who have Interstitial Cystitis who met the IC criteria by the National Institute of Health were compared with a control group of women in their community who did not have IC.  The women were matched by age and place of residence.  The ratio for the study was 1 case of IC per 12 control subjects.

In this mail survey, 53% of BPS/IC and 16% of controls responded. This amounted to 215 BPS/IC patients who were compared to 823 controls. Highlights of the data show that 42.3% of BPS/IC had hysterectomies compared to 21.4% of controls. Bladder suspensions were 4 times more common in the BPS/IC patients than controls, and laparoscopic pelvic surgical procedures almost 3 times as common. Endometriosis was diagnosed in 9.8% of controls and in 25.6% of BPS/IC patients. Focusing on hysterectomies, the authors found that 68% were done before a diagnosis of BPS/IC had been made. The finding that the majority of women with BPS/IC with a history of hysterectomy or bladder suspension had these surgical procedures before or the same year as their diagnosis of BPS/IC was made could indicate some sort of trigger for the development of symptoms of BPS/IC. Further data on the actual onset of the BPS/IC symptoms could give this hypothesis some grounding or dispel it altogether.

The study results found that there was anywhere from a one year to five year delay after a hysterectomy before IC Disease was diagnosed. The study can’t show that all the surgical procedures were unnecessary. The researchers, however, realize that there is still a problem with IC being recognized and properly diagnosed which can lead to unnecessary surgical procedures and prolonged pelvic pain in women.

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Diagnosing ME/CFS can be a process that takes years for some patients.  There is a not currently a diagnostic test that can determine that someone definitely has ME/CFS.  The illness is diagnosed by excluding all other illnesses that have similar symptoms, a complete blood work up, and whether or not the patient meets the official CDC Criteria:

Clinically evaluated, unexplained, persistent, or relapsing fatigue that is:

• Of new or definite onset
• Not a result of ongoing exertion
• Not alleviated by rest
• Results in a substantial reduction in previous levels of occupational, social, or personal activity

Four or more of the following symptoms that persist or recur during 6 or more consecutive months of illness & that do not predate the fatigue:

• Self-reported impairment of short-term memory or concentration
• Sore throat
• Tender lymph nodes
• Muscle pain
• Multi-joint pain without swelling or redness
• Headaches of a new type, pattern, or severity
• Unrefreshing and/or interrupted sleep
• Post-exertion malaise (this is a feeling of general discomfort or uneasiness) lasting more than 24 hours.

Tomorrow Part 4 will conclude on ME/CFS with treatment information.  If you missed the first two parts, you can read them below. 

Part 1

Part 2

I have had two cystocopys done and it was great to watch this video to see what things actually look like from the inside of someone’s body.   Although my urologist did a great job of explaining the procedure to me, there is nothing like a visual aid to see exactly what is happening.

Before watching this video I did not know what the pinpoint hemorrhages looked like that the doctor said was very obvious all over my bladder.  This video gives a visual to what they look like. 

You will also see in the video that a bladder biopsy is done.  The doctor will do this in order to rule out evidence of bladder cancer.

In order to make a diagnosis of IC Disease, a urologist has to rule out certain health conditions and illnesses.  Some of the tests that are done to do this include:

• Taking urine cultures to determine if bacteria is present and if a bladder infection or UTI is the cause of the symptoms.
• Ruling out other illnesses that have similar symptoms - bladder cancer, vaginal infections, STDs, endometriosis, neurological disorders, kidney problems, and tuberculosis.

If all of the above are ruled out, a urologist will next perform a cystocopy under general anesthesia.  The cystocopy with hydrodistention is necessary in order to make a proper diagnosis of Interstitial Cystitis.  This is the only way that the hallmark features of IC can be found - the pinpoint hemorrhages on the bladder wall.  A biopsy is taken as well to rule out bladder cancer.