For years I have suffered with Chronic Pain and did not know what was wrong with me. A lot of you that have been regular visitors to the Brew have known I had medical problems and went offline for weeks, sometimes months at a time because of them.
I had a total hysterectomy at age 29, thinking it would take the pain away but not only did the pain stay but I ended up having to have yet another surgery in March of 2004 to remove the ovaries that the first doctor was supposed to have done.
A few years ago, my Primary Care Physician mentioned a bladder disorder called Interstitial Cystitis and said I might have it. I had constant bladder pain but was testing negative for bladder or kidney infection. It took me until October of 03 to find a specialist who knew what IC was and its almost a 250-mile round trip to her office. I was officially diagnosed then after a procedure called hydrodistention.
I have pain so badly that some mornings, it is hard to even get out of bed. It causes depression, not to mention the physical discomfort and mental stress. Stress causes my condition to "flare" which is even worse than the normal pain that comes with it. On top of that, I have hypoglycemia and have low-blood sugar. I have to maintain a good diet to keep the blood sugar level up and the diet plays a big part in the IC. There are some foods that would raise my sugar but hurt my bladder... Chocolate, Caffeine, citrus foods, etc., all cause the bladder to "flare" - kinda like pouring salt into a wound. It's one of those "damned if you do, damned if you don't" situations.
I'd like to provide some information about IC just in case you or someone you know is suffering with this disorder. It can go undiagnosed for years unless you are aware of the disease. Many Urologists are just now learning about IC and what it does to the body and mind.
The following information about IC is not copyrighted. The clearinghouse encourages users of this information to duplicate and distribute as many copies as desired. You can find it at: http://www.niddk.nih.gov/health/kidney/kidney.htm
What is Interstitial Cystitis?
Interstitial Cystitis (IC) one of the chronic pelvic pain disorders, is a
condition resulting in recurring discomfort or pain in the bladder and the
surrounding pelvic region. The symptoms of IC vary from case to case and even in
the same individual. People may experience mild discomfort, pressure, tenderness,
or intense pain in the bladder and surrounding pelvic area. Symptoms may include
an urgent need to urinate (urgency), frequent need to urinate (frequency), or a
combination of these symptoms. Pain may change in intensity as the bladder
fills with urine or as it empties. Women's symptoms often get worse during
menstruation.
In IC, the bladder wall may be irritated and become scarred or stiff. Glomerulations (pinpoint bleedings caused by recurrent irritation) may appear on the bladder wall. Some people with IC find that their bladders cannot hold much urine, which increases the frequency of urination. Frequency, however, is not always specifically related to bladder size; many people with severe frequency have normal bladder capacity. People with severe cases of IC may urinate as many as 60 times a day.
Also, people with IC often experience pain during sexual intercourse. IC is far more common in women than in men. Of the more than 700,000 Americans estimated to have IC, 90% are women.
What Causes IC?
Some of the symptoms of IC resemble those of bacterial infection, but medical
tests reveal no organisms in the urine of patients with IC. Furthermore, patients
with IC do not respond to antibiotic therapy. Researchers are working to
understand the causes of IC and to find effective treatments.
One theory being studied is that IC is an auto immune response following a bladder infection. Another theory is that a bacterium may be present in bladder cells but not detectable through routine urine tests. Some scientists have suggested that certain substances in urine may be irritating to people with IC, but no substance unique to people with IC has as yet been isolated. Researchers are beginning to explore the possibility that heredity may play a part in some forms of IC. In a few cases, IC has affected a mother and a daughter or two sisters, but it does not commonly run in families. No gene has yet been implicated as a cause.
Are there Different Types of IC?
Because IC varies so much in symptoms and severity, most researchers believe
that it is not one, but several diseases. In the past, cases were mainly
categorized as ulcerative IC or non-ulcerative IC, based on whether ulcers had
formed on the bladder wall. But many researchers and clinicians have questioned
the usefulness of this classification, since the vast majority of cases do not
involve ulcers, and their presence or absence does not influence treatment options
as much as other factors do.
Factors that influence treatment options include whether bladder capacity under anesthesia is great or small (mine was a little under 900cc), and whether mast cells are present (I have mast cells) in the tissue of the bladder wall, which may be a sign of an allergic or autoimmune reaction. In some cases, the success or failure of a treatment helps characterize the type of IC. For example, some cases respond to changes in diet while others do not.
How is IC Diagnosed?
Because symptoms are similar to those of other disorders of the urinary
system, and because there is no definitive test to identify IC, doctors must
rule out other conditions before considering a diagnosis of IC. Among these
disorders are urinary tract or vaginal infections, bladder cancer, bladder
inflammation or infection caused by radiation to the pelvic area, eosinophilic
and tuberculous cystitis, kidney stones, endometriosis, neurological disorders,
sexually transmitted diseases, low-count bacteria in the urine and, in men,
chronic bacterial and nonbacterial prostatitis.
The diagnosis of IC in the general population is based on:
Diagnostic tests that help identify other conditions include urinalysis, urine culture, cystoscopy, biopsy of the bladder wall, urine cytology, and, in men, laboratory examination of prostatic secretions. The most important test to confirm IC is cystoscopy under anesthesia.
What are the Treatments for IC?
Scientists have not yet found a cure for IC, nor can they predict who will
respond best to which treatment. Symptoms may disappear without explanation or
coincide with an event such as a change in diet or treatment. Even when symptoms
disappear, they may return after days, weeks, months or years. Scientists do not
know why.
Because the causes of IC are unknown, treatments are aimed at relieving symptoms. Most people are helped for variable periods by one or a combination of treatments. As researchers learn more about IC, the list of potential treatments will change, so patients should discuss their options with a doctor.
You can read more information about IC at the IC-Network .. the link is listed below.
There are several other diseases that accompany IC, including Irritable Bowel Syndrome and Fibromyalgia, along with others. I have been diagnosed with IBS as well and my doctor think I may be developing Fibromyalgia also. Esta, the webmistress of Pagan and Proud of it has fibromyalagia and has made a great webpage with tons of info. Check it out.
I suffered without any type of pain control until a few months ago when I finally got into a good pain clinic with an excellent doctor. I'm finally getting adequate pain management and am starting to feel better than I have in years.
I filed for disability last October and was turned down for the 3rd time a couple weeks ago. I seen my attorney last week and he has filed an appeal for me. Interstitial Cystitis is listed as an impairment that SSA recognizes so my attorney is very positive on the case. I will post whatever happens here when I know something more.
Through all of this, I found a wonderful website that has been a lifeline for me. I am a board moderator for the Pain Management board there and have a great support system. Thanks to Jill for the IC Network - without it, I would still be suffering.
How has all of these problems affected my Faith? They've made it stronger and deeper... I know that I chose to go through these things to learn from them and I take each event and try to pull something positive out of it. I try to learn some type of lesson each day, whether it be patience, empathy or sympathy.. something comes from everything... one day at a time :-)
If this article can help just one person then it was worth sharing. If you are
suffering with IC and would like to email me, please feel free to do so...
I would love to hear from you.
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