Note: Our Sclero Forums support community is offline for an upgrade and remodeling. It will be back on or before October 5th.

Interstitial Cystitis (Bladder Inflammation)

Author: Shelley Ensz. Scleroderma is highly variable. See Types of Scleroderma. Read Disclaimer
Overactive Bladder
Patient Stories

Overview: What is Interstitial Cystitis?

Photo of drinking fountainInterstitial 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.

Interstitial Cystitis KaleidoscopePeople 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

Non-bladder Centric Interstitial cystitis (IC)/bladder Pain Syndrome (BPS) Phenotype Is Significantly Associated With Co-Occurring Endometriosis. This study characterizes features of a target IC/BPS phenotype that could potentially benefit from endometriosis and systemic pain syndrome screening. PubMed, Can J Urol, 2020 Jun;27(3):10257-10262. (Also see Autoimmune Disease Directory)

Prevalence and disease–specific risk factors for Lower Urinary Tract symptoms (LUTS) in Systemic Sclerosis: an international multi–centric study. Self–reported LUTS are amongst the most frequent symptoms in SSc and are associated with digestive complaints. PubMed, Arthritis Care Res (Hoboken), 10/26/2017.

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. (Also see Fibromyalgia, Chronic Fatigue Syndrome, and Irritable Bowel Syndrome)

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 and Interstitial Cystitis. Fibromyalgia, chronic fatigue syndrome and interstitial cystitis (IC) — a painful bladder condition — frequently occur together. VeryWell.

Bladder Malakoplakia

Case Report: Bladder Malakoplakia in Systemic Sclerosis Patient. This is the first case report of malakoplakia in a systemic sclerosis patient. PubMed, J Endourol Case Rep.


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.

Etiology, pathophysiology and biomarkers of interstitial cystitis/painful bladder syndrome. It could be suggested to classify the patients with emphasis on the phenotype, as well as their symptom clusters, to tailor the diagnostic and management choices according to the observed biomarkers. PubMed, Arch Gynecol Obstet, 04/08/2017.

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.

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?)


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.

New drug brings hope to as many as 400,000 sufferers of agonising bladder pain syndrome. As many as 400,000 people in UK are thought to have bladder pain syndrome, also known as interstitial cystitis. Mail Online, 10/26/2019.

For Urinary Incontinence, Try Behavioral Treatments or Drugs, or Both. Bladder training, biofeedback and other behavioral therapies may work even better in combination with drugs. New York Times, 03/22/2019.

Intravesical liposome therapy for interstitial cystitis. The present review discusses the properties of liposomes that are important for their intrinsic therapeutic effect, summarizes the recently completed clinical studies with intravesical liposomes and covers the latest developments in this field. PubMed, Int J Urol, 2017 Apr;24(4):262-271.

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.

The limited cutaneous form of systemic sclerosis (SSc) is associated with urinary incontinence (UI): an international multicentre study. Self–reported UI is frequent in SSc and disproportionally affects the limited cutaneous form of the disease and patients positive for Anticentromere Antibodies. PubMed, Rheumatology (Oxford), 08/01/2017. (Also see Antibodies)

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…

Go to Systemic Lupus Erythematosus (SLE)

We have the world's best supporters! See ISN News.


SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses. We are a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team. Donations may also be mailed to:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected]. Disclaimer. Privacy Policy.

The most important thing in the world to know about scleroderma is!