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Interstitial Cystitis (Bladder Inflammation)

Author: Shelley Ensz. Scleroderma is highly variable. See Types of Scleroderma. Read Disclaimer
Overview
Autoimmune
Fibromyalgia
Diagnosis
Treatments
Overactive Bladder
Patient Stories

Overview: What is Interstitial Cystitis?

Interstitial cystitis (IC) is an inflammation of the bladder which can occur by itself or in conjunction with other autoimmune diseases, such as fibromyalgia,, scleroderma, lupus, or Sjögren's Syndrome. (Also see: Autoimmune Diseases)
Although interstitial cystitis can occur with scleroderma, it is not part of the diagnostic criteria for any form of scleroderma, and many IC patients never go on to develop scleroderma or other autoimmune diseases.
Symptoms of interstitial cystitis (IC) include bladder spasms (which can be very painful), bladder frequency, bladder pain, low bladder capacity, and incontinence. Very often, Interstitial Cystitis patients are wrongly treated for what their doctors assume must be bladder infections, urethritis, or "emotional" problems.
Repeated symptoms of urinary tract infections which do not show actual infection on testing is a hallmark symptom of interstitial cystitis. The frequency and urgency which IC can cause is not the same as that brought on by drinking a lot of fluids, or from the use of diuretics, although the symptoms do worsen for some people with coffee consumption, etc.
If you have chronic and disruptive urinary symptoms, you must see a urologist to deal with this, and only one who is very well-versed in interstitial cystitis. IC is largely a female problem, and urologists often deal largely with males, so its very important to screen your doctor carefully or you will likely get the wrong diagnosis, and thus ineffective or even damaging treatment.
Don't accept the brush-off that "it must be an infection which just isn't showing up" if this has been a recurring situation for you. Antibiotics can actually worsen the IC or trigger bad flares of it. And psycho-babble is less than useless for what is a very real physical ailment. Stress can worsen IC symptoms but it is not the cause of them.
People with any autoimmune disease are more susceptible to IC. Many internists, rheumatologists, and even many urologists, are unaware of or do not "believe" in interstitial cystitis. Unfortunately, this is a disease where the patient must often take the initiative to research and document their symptoms, request referrals to a specialist in interstitial cystitis, and often ask for specific procedures to be done to garner the proper diagnosis and treatment.

Interstitial Cystitis and Autoimmune Diseases

Sympathetic nervous system dysfunction in fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, and interstitial cystitis. Sympathetic dysfunction could be the common underlying pathogenesis that brings on these overlapping clinical features. PubMed, J Clin Rheumatol. 2014 Apr;20(3):146-50. (Also see: Fibromyalgia, Chronic Fatigue Syndrome, and Irritable Bowel Syndrome)
A case-control study on the association between rheumatoid arthritis and bladder pain syndrome/interstitial cystitis. There is an association between RA and BPS/IC after adjusting for socio-demographic characteristics and medical co-morbidities. PubMed. Neurourol Urodyn. 2012 Nov 5.
Sjogren's Syndrome and Interstitial Cystitis. Social Security Disability Insurance guidelines and highlights IC as one of many overlapping conditions experienced by people with Sjogren's. ICA. (Also see: Sjogren's Syndrome)

Interstitial Cystitis and Fibromyalgia

Fibromyalgia, Chronic Fatigue Syndrome & Interstitial Cystitis. Fibromyalgia, chronic fatigue syndrome and interstitial cystitis (IC) — a painful bladder condition — frequently occur together. About.com. Updated 4/20/2013.

Diagnosis

Interstitial cystitis is most often diagnosed by cytoscopy (bladder examination under anesthesia), in which typical findings are low bladder capacity, Hunner's ulcer, and petecchial hemorrhages (pinpoint bleeding) of the lining of the bladder.
Urination Problems Both men and women can experience pain and difficulty with urination caused by common conditions, as well as more serious problems. Follow this chart for more information about these symptoms and their care. familydoctor.org.
Adolescent pelvic pain: Interstitial cystitis. Interstitial cystitis (IC) is a syndrome characterized by urinary urgency and frequency, dysuria, nocturia, and suprapubic pain. PubMed, J Pediatr Urol, 2013 Jun;9(3):e134-7.
Interstitial Cystitis Causes. An unexplained association of IC has been found to exist with other autoimmune diseases such as inflammatory bowel disease, systemic lupus erythematosus, scleroderma, Sjogren syndrome, fibromyalgia, and atopic allergy. emedicinehealth. (Also see: What is Scleroderma?)

Treatments

Some patients find relief through the bladder distention done during cytoscopy.
Tricyclic antidepressants and other medications can help subdue symptoms temporarily, but DMSO and/or bladder distention surgery are usually the best long-term solutions since they directly address the underlying ailment.
Elmiron (pentosan polysulfate sodium) is an oral medication, which costs around $160 a month. Side effects may include gastrointestinal disturbances and hair loss, and it may take 2 to 9 months to see improvement in symptoms.
Cystectomy for ulcerative interstitial cystitis (IC): sequelae and patients' perceptions of improvement. Despite subsequent reoperations, symptom improvements lead to high levels of satisfaction with cystectomy for IC. PubMed, Urology, 2013 Oct;82(4):829-33.

Overactive Bladder

Overactive bladder is very common and also treatable problem. Many people assume that frequency (over 8 bathroom trips a day) is "normal" as they age, and thus fail to report this treatment symptom to their doctors. If you do not have any other symptoms of interstitial cystitis (such as painful bladder spasms), then you probably have overactive bladder. Track how often you have to go to the bathroom, on average, and report it to your doctor if you take over 8 trips per day with a normal (not excessive) fluid intake.

Patient Stories

Amanda: Diffuse Scleroderma Systemic Sclerosis I am thirty-nine years old and was diagnosed with diffuse scleroderma systemic sclerosis in August 2007...
Brandi K: Interstitial Cystitis I am at the end of the road and cannot find a doctor who can help me...
Ellen: Interstitial Cystitis with Bladder Removal I feel like I have hit a dead end. My quality of life is worse than ever...
Gail: Undifferentiated Connective Tissue Disease (UCTD) They did a series of tests and blood work and found I had Interstitial Cystitis, a positive ANA, and gastrointestinal dysmotility...
Jan L: Linear Scleroderma and Vitiligo I was not ever overly concerned with my looks, so I really did not pay that much attention to it...
Michael K: Interstitial Cystitis I was first diagnosed with Interstitial Cystitis (IC) when I was twenty-two years old...
Rachelle: Interstitial Cystitis I am just happy after two and a half years to know that I have a real answer and I can get better...
Tina G: Systemic Scleroderma and Interstitial Cystitis Interstitial Cystitis is a bladder disease that destroys the lining of the bladder and causes it to harden and shrink. The symptoms are frequent urination, pain and pressure...
 
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