| Associated Conditions: MAIN MENU | | | |
Autoimmune Diseases:
Interstitial Cystitis (Bladder Inflammation) |
| This page was written by Shelley Ensz, and has not yet been medically edited. Scleroderma (SD) affects everyone differently. Just because something is listed here does not mean an individual patient will ever experience it. See Disclaimer. |
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| 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. |
| 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 |
| Sphincter Involvement in Systemic Sclerosis: A Pilot Study. Vesicouretheral sphincter involvement is not correlated to lower urinary tract infections. Although there is a high frequency of esophageal dysfunction in the manometric study, it is not correlated to vesicouretheral dysfunction. J. Marques Neto. FRI0318 EULAR 2004. |
| Intercurrent autoimmune conditions in classic and non-ulcer interstitial cystitis. Several authors have reported on autoantibodies in patients with IC and clinical and histopathological findings show similarities with those in some autoimmune disorders. It appears that systemic and autoimmune disorders are more prevalent in the IC population than in the general population. PubMed. Scand J Urol Nephrol 2003;37(1):60-3. |
| Interstitial Cystitis and Fibromyalgia |
| Clinical evaluation of 30 patients with interstitial cystitis (IC) complicated by fibromyalgia (FM). Approximately 11% of patients with IC have a complication of FM. They feel isolated due to the lack of understanding of the disease and endure generalized intolerable pain. PubMed. Nippon Hinyokika Gakkai Zasshi. 2005 Jul;96(5):554-9. (Also see: Fibromyalgia) |
| The relationship between fibromyalgia and interstitial cystitis. These data suggest that IC and fibromyalgia have significant overlap in symptomatology...Although central mechanisms have been suspected to contribute to the pathogenesis of fibromyalgia for some time, we speculate that these same types of mechanisms may be operative in IC, which has traditionally been felt to be a bladder disorder. J Psychiatr Res 1997 Jan-Feb;31(1):125-31 (Also see:Fibromyalgia) |
| 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. |
| Lower urinary tract involvement is a common manifestation of systemic sclerosis. It may represent a troublesome disturbance affecting the quality of life in systemic sclerosis patients. PubMed. Ann Urol (Paris). 2003 Oct;37(5):267-71. |
| The bladder is a rare site of scleroderma. Scleroderma bladder involvement usually presents in the form of frequency and burning, but may sometimes cause urgency or recurrent urinary tract infections. PubMed. Prog Urol 2002 Dec;12(6):1302-4. (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. |
| Treatment approaches for painful bladder syndrome/interstitial cystitis. There is no curative treatment; intravesical dimethyl sulfoxide, as well as oral amitriptyline, pentosan polysulfate and hydroxyzine have variable results, with success more likely when these drugs are given together. (PubMed) Drugs 2007; 67(2):215-35. |
| Limited Benefit Found In Pentosan Polysulfate Sodium (Elmiron) And Hydroxyzine Hydrochloride (Atarax) For Interstitial Cystitis. Because these treatments proved ineffective for the majority of patients, researchers do not plan to expand the trial. But the group has already recruited patients for its second treatment study, which is testing whether the bacterium Bacillus Calmette-Guérin (BCG), directly instilled in the bladder, relieves the pelvic pain and frequent urination that are hallmarks of IC. Doctor's Guide. NIH/National Institute of Diabetes and Digestive and Kidney Diseases 08/14/03. |
| 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. |
| Irritable Bladder Syndrome. The main symptoms are frequency, urgency and bladder discomfort/pain. Bladder Pain Syndrome Association. |
| Sources |
| Interstitial Cystitis. Includes a chart to tell the difference between I.C. and a bladder infection. Bladder Pain Syndrome Association. |
| Irritable Bladder Syndrome. Bladder Pain Syndrome Association. |
| 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... |
