Materiały źródłowe

• #1 Interstitial Cystitis/Bladder Pain Syndrome – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK570588/

  Interstitial cystitis/bladder pain syndrome (IC/BPS) is a complex and chronic medical condition that primarily affects the urinary bladder, leading to a range of distressing symptoms. […] Interstitial cystitis remains challenging to diagnose and manage, as its precise causes are not fully understood, and it can mimic other urinary tract disorders. […] Due to the nature of IC/BPS, it is very difficult to formulate a clear early diagnosis, and no accepted screening tool exists. Therefore, the data surrounding its prevalence remains limited. […] Some studies have specifically looked into the epidemiology of IC/BPS. […] Based on a large population, questionnaire-based prevalence study in the US, 2.7% of women and 1.9% of men met the specified criteria. […] Other studies have estimated the prevalence at 6% with a higher incidence in women.

• #2 Interstitial Cystitis/Bladder Pain Syndrome | Treatment & Management | Point of Care

  https://www.statpearls.com/point-of-care/132252

  Due to the nature of IC/BPS, it is very difficult to formulate a clear early diagnosis, and no accepted screening tool exists. Therefore, the data surrounding its prevalence remains limited. […] Based on a large population, questionnaire-based prevalence study in the US, 2.7% of women and 1.9% of men met the specified criteria. […] Other studies have estimated the prevalence at 6% with a higher incidence in women. […] In terms of age groups, the most common prevalence was in women between 50 to 59 years of age and men between 56 to 74 years of age. […] IC/BPS has an estimated prevalence of 3 million to 8 million women and 1 million to 4 million men in the US. […] The number of men affected is probably underestimated, as many are misdiagnosed as having chronic prostatitis. […] Investigations have noted a female predisposition, with 1 study in the US finding a 5 to 1 ratio.

• #3 Interstitial Cystitis/Bladder Pain Syndrome | Abdominal Key

  https://abdominalkey.com/interstitial-cystitisbladder-pain-syndrome/

  Interstitial cystitis/bladder pain syndrome (IC/BPS) is a condition diagnosed primarily on the basis of clinical symptomatology. […] Epidemiology studies of IC/BPS have suffered from the lack of a universally accepted definition, the absence of a validated diagnostic marker or clinical test that assures the diagnosis is made in a uniform manner by different clinicians in different geographic areas, and the lack of a pathognomonic finding on histologic biopsy of bladder tissue. […] The first population-based study included patients with interstitial cystitis in Helsinki, Finland. The prevalence was 18.1 per 100,000 women and 10.6 per 100,000 population. […] Another early population study from the United States in 1987 first demonstrated the potential extent of what had been considered a very rare disorder.

• #4 Interstitial Cystitis/Bladder Pain Syndrome | Abdominal Key

  https://abdominalkey.com/interstitial-cystitisbladder-pain-syndrome/

  More recent epidemiologic studies using different operational definitions have yielded wildly disparate data, from 35 to 24,000 per 100,000 in the United States, to 1.2 per 100,000 in Japan and 7 per 100,000 in the Netherlands. […] Population-based studies using the OLeary-Sant Interstitial Cystitis Symptom Index generally show a prevalence of 300 per 100,000 persons. […] The Rand Corp., in the largest population-based study in the United States to date, suggested that 2.7% of the adult female population has symptoms suggestive of IC/BPS. […] In the absence of a validated marker, it may be difficult to differentiate chronic pelvic pain syndrome (CPPS) in men (nonbacterial prostatitis) from BPS. […] Only 10% to 20% of patients with IC/BPS in most series have true isolated inflammatory bladder lesions on endoscopy that tend to crack and bleed with distention (Hunner lesions).

• #5 Broaden Horizons: The Advancement of Interstitial Cystitis/Bladder Pain Syndrome

  https://www.mdpi.com/1422-0067/23/23/14594

  Interstitial cystitis/bladder pain syndrome (IC/BPS) is a debilitating disease that induces mental stress, lower urinary symptoms, and pelvic pain, therefore resulting in a decline in quality of life. […] The prevalence of IC/BPS varies widely since uniform definitions and methods are lacking, and current evidence estimates a rate between 0.01% and 6.5%. […] Many studies have demonstrated differences in the prevalence of IC/BPS across different regions and ethnicities. […] The prevalence among American women ranged from 2.7% to 6.5%. […] In Europe, the estimated morbidity is 300/100,000 in Finland, 206/100,000 in Austria and 147/100,000 in Boston. […] In Asia, approximately 261 Korean women for every 100,000 suffer from IC/BPS, and the Japanese population has a similar rate of 0.027%.

• #6 Broaden Horizons: The Advancement of Interstitial Cystitis/Bladder Pain Syndrome

  https://www.mdpi.com/1422-0067/23/23/14594

  Interstitial cystitis/bladder pain syndrome (IC/BPS) is a debilitating disease that induces mental stress, lower urinary symptoms, and pelvic pain, therefore resulting in a decline in quality of life. […] The prevalence of IC/BPS varies widely since uniform definitions and methods are lacking, and current evidence estimates a rate between 0.01% and 6.5%. […] Many studies have demonstrated differences in the prevalence of IC/BPS across different regions and ethnicities. […] The prevalence among American women ranged from 2.7% to 6.5%. […] In Europe, the estimated morbidity is 300/100,000 in Finland, 206/100,000 in Austria and 147/100,000 in Boston. […] In Asia, approximately 261 Korean women for every 100,000 suffer from IC/BPS, and the Japanese population has a similar rate of 0.027%.

• #7 Interstitial Cystitis/Bladder Pain Syndrome – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK570588/

  Interstitial cystitis/bladder pain syndrome (IC/BPS) is a complex and chronic medical condition that primarily affects the urinary bladder, leading to a range of distressing symptoms. […] Interstitial cystitis remains challenging to diagnose and manage, as its precise causes are not fully understood, and it can mimic other urinary tract disorders. […] Due to the nature of IC/BPS, it is very difficult to formulate a clear early diagnosis, and no accepted screening tool exists. Therefore, the data surrounding its prevalence remains limited. […] Some studies have specifically looked into the epidemiology of IC/BPS. […] Based on a large population, questionnaire-based prevalence study in the US, 2.7% of women and 1.9% of men met the specified criteria. […] Other studies have estimated the prevalence at 6% with a higher incidence in women.

• #8 Interstitial Cystitis/Bladder Pain Syndrome | Treatment & Management | Point of Care

  https://www.statpearls.com/point-of-care/132252

  Due to the nature of IC/BPS, it is very difficult to formulate a clear early diagnosis, and no accepted screening tool exists. Therefore, the data surrounding its prevalence remains limited. […] Based on a large population, questionnaire-based prevalence study in the US, 2.7% of women and 1.9% of men met the specified criteria. […] Other studies have estimated the prevalence at 6% with a higher incidence in women. […] In terms of age groups, the most common prevalence was in women between 50 to 59 years of age and men between 56 to 74 years of age. […] IC/BPS has an estimated prevalence of 3 million to 8 million women and 1 million to 4 million men in the US. […] The number of men affected is probably underestimated, as many are misdiagnosed as having chronic prostatitis. […] Investigations have noted a female predisposition, with 1 study in the US finding a 5 to 1 ratio.

• #9 Prevalence of Symptoms of Bladder Pain Syndrome/Interstitial Cystitis Among Adult Females in the United States

  https://pmc.ncbi.nlm.nih.gov/articles/PMC3513327/

  Bladder pain syndrome/interstitial cystitis is a poorly understood condition that can cause serious disability. We provide the first population based symptom prevalence estimate to our knowledge among United States adult females. […] Based on the high sensitivity definition 6.53% (95% CI 6.28, 6.79) of women met symptom criteria. Based on the high specificity definition 2.70% (95% CI 2.53, 2.86) of women met the criteria. These percentages translated into 3.3 to 7.9 million United States women 18 years old or older with bladder pain syndrome/interstitial cystitis symptoms. […] Bladder pain syndrome/interstitial cystitis symptoms are widespread among United States women and associated with considerable disability. These results suggest bladder pain syndrome/interstitial cystitis may be underdiagnosed.

• #10  Interstitial Cystitis Network  – Interstitial Cystitis Prevalence and Epidemiology

  https://www.icnetwork.org/interstitial-cystitis-prevalence-epidemiology/

  IC/BPS affects millions of men and women around the world. In the USA alone, the impact of IC is profound. […] Two RAND prevalence studies (1,2) found that: 3.2 to 7.9 million women (2.7 to 6.5% of all women) […] 1 to 4 million men* have symptoms of IC. […] Quite a few epidemiological studies have been done over the years.(3-7) They have found that: […] The average age of onset for IC is 40 years, with 25% of patients under the age of 30. A late deterioration of symptoms is unusual. […] Patients with IC are 10 to 12 times more likely to report childhood bladder problems. […] Patients with IC are twice as likely report a history of urinary tract infection; however, over half of all IC patients report fewer than one such infection per year before the onset of IC. […] IC patients have suicidal thoughts 3-4 times above the national average. […] The quality of life of IC patients is worse than patients experiencing chronic renal failure and undergoing dialysis.

• #11 Interstitial Cystitis: Practice Essentials, Background, Pathophysiology

  https://emedicine.medscape.com/article/2055505-overview

  Reports from Europe indicate a prevalence of 18 cases per 100,000 women, whereas only 3-4 cases per 100,000 women are reported in Japan. The marked differences between these countries and the United States are likely due to differences in diagnostic criteria, varying from all-encompassing clinical criteria (eg, those from the National Institute of Diabetes Digestive Kidney Diseases [NIDDK] of the US National Institutes of Health) to very strict criteria based on a pathologic diagnosis. Epidemiologic studies are difficult, given the wide variability in which patients are identified as research subjects. Some studies ask individuals to self-identify, while others survey physicians who may be unfamiliar with IC/BPS. […] Using a validated IC/BPS case definition, Berry et al discovered that only 50% of women who met criteria for IC/BPS had been evaluated by a urologist and only 10% carried the diagnosis, which strengthens the argument that this disease is largely underreported.

• #12 Broaden Horizons: The Advancement of Interstitial Cystitis/Bladder Pain Syndrome

  https://www.mdpi.com/1422-0067/23/23/14594

  Interstitial cystitis/bladder pain syndrome (IC/BPS) is a debilitating disease that induces mental stress, lower urinary symptoms, and pelvic pain, therefore resulting in a decline in quality of life. […] The prevalence of IC/BPS varies widely since uniform definitions and methods are lacking, and current evidence estimates a rate between 0.01% and 6.5%. […] Many studies have demonstrated differences in the prevalence of IC/BPS across different regions and ethnicities. […] The prevalence among American women ranged from 2.7% to 6.5%. […] In Europe, the estimated morbidity is 300/100,000 in Finland, 206/100,000 in Austria and 147/100,000 in Boston. […] In Asia, approximately 261 Korean women for every 100,000 suffer from IC/BPS, and the Japanese population has a similar rate of 0.027%.

• #13 Broaden Horizons: The Advancement of Interstitial Cystitis/Bladder Pain Syndrome

  https://www.mdpi.com/1422-0067/23/23/14594

  Interstitial cystitis/bladder pain syndrome (IC/BPS) is a debilitating disease that induces mental stress, lower urinary symptoms, and pelvic pain, therefore resulting in a decline in quality of life. […] The prevalence of IC/BPS varies widely since uniform definitions and methods are lacking, and current evidence estimates a rate between 0.01% and 6.5%. […] Many studies have demonstrated differences in the prevalence of IC/BPS across different regions and ethnicities. […] The prevalence among American women ranged from 2.7% to 6.5%. […] In Europe, the estimated morbidity is 300/100,000 in Finland, 206/100,000 in Austria and 147/100,000 in Boston. […] In Asia, approximately 261 Korean women for every 100,000 suffer from IC/BPS, and the Japanese population has a similar rate of 0.027%.

• #14 Interstitial Cystitis/Bladder Pain Syndrome – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK570588/

  In terms of age groups, the most common prevalence was in women between 50 to 59 years of age and men between 56 to 74 years of age. […] IC/BPS has an estimated prevalence of 3 million to 8 million women and 1 million to 4 million men in the US. […] The number of men affected is probably underestimated, as many are misdiagnosed as having chronic prostatitis. […] Investigations have noted a female predisposition, with 1 study in the US finding a 5 to 1 ratio. […] A study in the Netherlands quoted a prevalence as low as 8 to 16 out of 100,000 individuals. […] It is estimated that IC/BPS affects up to 400,000 patients in the UK, with almost 90% being women between 50 to 69 years of age. […] The data for children affected by IC/BPS is poor, but the consensus is that the prevalence is very low in the pediatric population.

• #15 Interstitial Cystitis/Bladder Pain Syndrome | Treatment & Management | Point of Care

  https://www.statpearls.com/point-of-care/132252

  A study in the Netherlands quoted a prevalence as low as 8 to 16 out of 100,000 individuals. […] It is estimated that IC/BPS affects up to 400,000 patients in the UK, with almost 90% being women between 50 to 69 years of age. […] The data for children affected by IC/BPS is poor, but the consensus is that the prevalence is very low in the pediatric population.

• #16 Interstitial Cystitis/Bladder Pain Syndrome – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK570588/

  In terms of age groups, the most common prevalence was in women between 50 to 59 years of age and men between 56 to 74 years of age. […] IC/BPS has an estimated prevalence of 3 million to 8 million women and 1 million to 4 million men in the US. […] The number of men affected is probably underestimated, as many are misdiagnosed as having chronic prostatitis. […] Investigations have noted a female predisposition, with 1 study in the US finding a 5 to 1 ratio. […] A study in the Netherlands quoted a prevalence as low as 8 to 16 out of 100,000 individuals. […] It is estimated that IC/BPS affects up to 400,000 patients in the UK, with almost 90% being women between 50 to 69 years of age. […] The data for children affected by IC/BPS is poor, but the consensus is that the prevalence is very low in the pediatric population.

• #17 Painful Bladder Syndrome (Interstitial Cystitis) | Doctor

  https://patient.info/doctor/interstitial-cystitispainful-bladder-syndrome-pro

  PBS is a diagnosis of exclusion with no definitive diagnostic test. Therefore it is difficult to estimate prevalence, which can be dependent on whether symptoms are clinician-assigned or patient-reported. A large American study found prevalence rates of 2.3-6.5%. However, a study in the Netherlands suggested a much lower prevalence of 0.008 – 0.016%. […] PBS is between two and five times more common in women than men. However, many women are often reluctant to seek treatment. […] The average age at diagnosis is 40 years. […] Prevalence is highest in women between 50 and 59 and men between 56 and 74. It is estimated that IC/BPS affects up to 400,000 patients in the UK, with almost 90% being women between 50 to 69 years of age. […] It is very rare in children.

• #18 Broaden Horizons: The Advancement of Interstitial Cystitis/Bladder Pain Syndrome

  https://www.mdpi.com/1422-0067/23/23/14594

  Interstitial cystitis/bladder pain syndrome (IC/BPS) is a debilitating disease that induces mental stress, lower urinary symptoms, and pelvic pain, therefore resulting in a decline in quality of life. […] The prevalence of IC/BPS varies widely since uniform definitions and methods are lacking, and current evidence estimates a rate between 0.01% and 6.5%. […] Many studies have demonstrated differences in the prevalence of IC/BPS across different regions and ethnicities. […] The prevalence among American women ranged from 2.7% to 6.5%. […] In Europe, the estimated morbidity is 300/100,000 in Finland, 206/100,000 in Austria and 147/100,000 in Boston. […] In Asia, approximately 261 Korean women for every 100,000 suffer from IC/BPS, and the Japanese population has a similar rate of 0.027%.

• #19 Broaden Horizons: The Advancement of Interstitial Cystitis/Bladder Pain Syndrome

  https://www.mdpi.com/1422-0067/23/23/14594

  Interstitial cystitis/bladder pain syndrome (IC/BPS) is a debilitating disease that induces mental stress, lower urinary symptoms, and pelvic pain, therefore resulting in a decline in quality of life. […] The prevalence of IC/BPS varies widely since uniform definitions and methods are lacking, and current evidence estimates a rate between 0.01% and 6.5%. […] Many studies have demonstrated differences in the prevalence of IC/BPS across different regions and ethnicities. […] The prevalence among American women ranged from 2.7% to 6.5%. […] In Europe, the estimated morbidity is 300/100,000 in Finland, 206/100,000 in Austria and 147/100,000 in Boston. […] In Asia, approximately 261 Korean women for every 100,000 suffer from IC/BPS, and the Japanese population has a similar rate of 0.027%.

• #20 Broaden Horizons: The Advancement of Interstitial Cystitis/Bladder Pain Syndrome

  https://www.mdpi.com/1422-0067/23/23/14594

  Interstitial cystitis/bladder pain syndrome (IC/BPS) is a debilitating disease that induces mental stress, lower urinary symptoms, and pelvic pain, therefore resulting in a decline in quality of life. […] The prevalence of IC/BPS varies widely since uniform definitions and methods are lacking, and current evidence estimates a rate between 0.01% and 6.5%. […] Many studies have demonstrated differences in the prevalence of IC/BPS across different regions and ethnicities. […] The prevalence among American women ranged from 2.7% to 6.5%. […] In Europe, the estimated morbidity is 300/100,000 in Finland, 206/100,000 in Austria and 147/100,000 in Boston. […] In Asia, approximately 261 Korean women for every 100,000 suffer from IC/BPS, and the Japanese population has a similar rate of 0.027%.

• #21 Broaden Horizons: The Advancement of Interstitial Cystitis/Bladder Pain Syndrome

  https://www.mdpi.com/1422-0067/23/23/14594

  In contrast, the incidence rate of the disease in China is relatively low, with only 21.8–100 in 100,000 developing IC/BPS. […] IC/BPS is more common in women than men, with a female-to-male ratio in incidence rates of approximately five to one. […] Average annual healthcare costs following the diagnosis of IC/BPS are 2.0 to 2.4 times higher than in age-matched controls. […] The etiology of IC/BPS is not fully understood thus far; however, considerable evidence has shown that it involves a complex interplay of neurological, endocrine, immune and other mechanisms. […] The pathological mechanism of IC/BPS is undefined. […] The European Society for the Study of IC/BPS (ESSIC) proposed that IC/BPS could be typed based on cystoscopy after hydrodistension of the bladder and bladder biopsies.

• #22 Interstitial Cystitis/Bladder Pain Syndrome – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK570588/

  In terms of age groups, the most common prevalence was in women between 50 to 59 years of age and men between 56 to 74 years of age. […] IC/BPS has an estimated prevalence of 3 million to 8 million women and 1 million to 4 million men in the US. […] The number of men affected is probably underestimated, as many are misdiagnosed as having chronic prostatitis. […] Investigations have noted a female predisposition, with 1 study in the US finding a 5 to 1 ratio. […] A study in the Netherlands quoted a prevalence as low as 8 to 16 out of 100,000 individuals. […] It is estimated that IC/BPS affects up to 400,000 patients in the UK, with almost 90% being women between 50 to 69 years of age. […] The data for children affected by IC/BPS is poor, but the consensus is that the prevalence is very low in the pediatric population.

• #23 Interstitial Cystitis/Bladder Pain Syndrome – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK570588/

  In terms of age groups, the most common prevalence was in women between 50 to 59 years of age and men between 56 to 74 years of age. […] IC/BPS has an estimated prevalence of 3 million to 8 million women and 1 million to 4 million men in the US. […] The number of men affected is probably underestimated, as many are misdiagnosed as having chronic prostatitis. […] Investigations have noted a female predisposition, with 1 study in the US finding a 5 to 1 ratio. […] A study in the Netherlands quoted a prevalence as low as 8 to 16 out of 100,000 individuals. […] It is estimated that IC/BPS affects up to 400,000 patients in the UK, with almost 90% being women between 50 to 69 years of age. […] The data for children affected by IC/BPS is poor, but the consensus is that the prevalence is very low in the pediatric population.

• #24 Broaden Horizons: The Advancement of Interstitial Cystitis/Bladder Pain Syndrome

  https://www.mdpi.com/1422-0067/23/23/14594

  In contrast, the incidence rate of the disease in China is relatively low, with only 21.8–100 in 100,000 developing IC/BPS. […] IC/BPS is more common in women than men, with a female-to-male ratio in incidence rates of approximately five to one. […] Average annual healthcare costs following the diagnosis of IC/BPS are 2.0 to 2.4 times higher than in age-matched controls. […] The etiology of IC/BPS is not fully understood thus far; however, considerable evidence has shown that it involves a complex interplay of neurological, endocrine, immune and other mechanisms. […] The pathological mechanism of IC/BPS is undefined. […] The European Society for the Study of IC/BPS (ESSIC) proposed that IC/BPS could be typed based on cystoscopy after hydrodistension of the bladder and bladder biopsies.

• #25 Interstitial Cystitis: Practice Essentials, Background, Pathophysiology

  https://emedicine.medscape.com/article/2055505-overview

  Of patients with interstitial cystitis, 94% are White and approximately 90% are female. Interstitial cystitis appears to be slightly more common in Jewish women. The condition is also dramatically under-reported in men. There is significant overlap of symptoms of IC/BPS and symptoms of patients with chronic prostatitis/chronic pelvic pain syndrome. In fact, 17% of men were reported to have symptoms of both complexes. This supports the hypothesis that IC/BPS and chronic prostatitis/chronic pelvic pain syndrome share a common pathophysiology in men. However, many of these studies rely on the patient’s self-reported symptoms, so estimates of incidence in men are likely higher than previously reported. […] Median age at presentation is 40 years. However, Close et al have shown that interstitial cystitis may occur in children. In their series, the median age of onset was 4.5 years, with a mean age of diagnosis of 8.2 years. The children had diffuse glomerulations and terminal hematuria. Of the 16 children in the study, 15 improved after bladder hydrodistention.

• #26 Interstitial Cystitis/Bladder Pain Syndrome – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK570588/

  In terms of age groups, the most common prevalence was in women between 50 to 59 years of age and men between 56 to 74 years of age. […] IC/BPS has an estimated prevalence of 3 million to 8 million women and 1 million to 4 million men in the US. […] The number of men affected is probably underestimated, as many are misdiagnosed as having chronic prostatitis. […] Investigations have noted a female predisposition, with 1 study in the US finding a 5 to 1 ratio. […] A study in the Netherlands quoted a prevalence as low as 8 to 16 out of 100,000 individuals. […] It is estimated that IC/BPS affects up to 400,000 patients in the UK, with almost 90% being women between 50 to 69 years of age. […] The data for children affected by IC/BPS is poor, but the consensus is that the prevalence is very low in the pediatric population.

• #27 Interstitial Cystitis/Bladder Pain Syndrome | Treatment & Management | Point of Care

  https://www.statpearls.com/point-of-care/132252

  Due to the nature of IC/BPS, it is very difficult to formulate a clear early diagnosis, and no accepted screening tool exists. Therefore, the data surrounding its prevalence remains limited. […] Based on a large population, questionnaire-based prevalence study in the US, 2.7% of women and 1.9% of men met the specified criteria. […] Other studies have estimated the prevalence at 6% with a higher incidence in women. […] In terms of age groups, the most common prevalence was in women between 50 to 59 years of age and men between 56 to 74 years of age. […] IC/BPS has an estimated prevalence of 3 million to 8 million women and 1 million to 4 million men in the US. […] The number of men affected is probably underestimated, as many are misdiagnosed as having chronic prostatitis. […] Investigations have noted a female predisposition, with 1 study in the US finding a 5 to 1 ratio.

• #28 Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) – American Urological Association

  https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022)

  Table 2: RICE BPS/IC Case Definitions […] Berry et al. (2011) used the questionnaire to determine prevalence of IC/BPS among adult females in the US. This study yielded prevalence estimates of from 2.7% to 6.53% (approximately 3.3 to 7.9 million US women age 18 or older). Only 9.7% of women who met the definitions reported having been given an IC/BPS diagnosis. Suskind et al. (2013) modified the case definition for use in men and used an additional case definition derived from the NIH-Chronic Prostatitis Symptom Index to assess the prevalence and overlap between IC/BPS and chronic prostatitis/chronic pelvic pain syndrome in men (CP/CPPS). This study yielded a prevalence estimate of from 2.9% to 4.2% for IC/BPS and a prevalence of 1.8% for CP/CPPS. The overlap between the two syndromes was approximately 17%. The authors note that these findings suggest that the prevalence of IC/BPS in men approaches its prevalence in women; therefore, it may be greatly under-diagnosed in the male population.

• #29 The Prevalence and Overlap of Interstitial Cystitis/Bladder Pain Syndrome and Chronic Prostatitis/Chronic Pelvic Pain Syndrome in Men: Results of the RAND Interstitial Cystitis Epidemiology Male Study

  https://escholarship.org/uc/item/1hc694zk

  The interstitial cystitis/bladder pain syndrome weighted prevalence estimates for the high sensitivity and high specificity definitions were 4.2% (3.1-5.3) and 1.9% (1.1-2.7), respectively. […] The chronic prostatitis/chronic pelvic pain syndrome weighted prevalence estimate was 1.8% (0.9-2.7). […] These values equate to 1,986,972 (95% CI 966,042-2,996,924) men with chronic prostatitis/chronic pelvic pain syndrome and 2,107,727 (95% CI 1,240,485-2,974,969) men with the high specificity definition of interstitial cystitis/bladder pain syndrome in the United States. […] The overlap between men who met the high specificity interstitial cystitis/bladder pain syndrome case definition or the chronic prostatitis/chronic pelvic pain syndrome case definition was 17%. […] Symptoms of interstitial cystitis/bladder pain syndrome and chronic prostatitis/chronic pelvic pain syndrome are widespread among men in the United States. […] The prevalence of interstitial cystitis/bladder pain syndrome symptoms in men approaches that in women, suggesting that this condition may be underdiagnosed in the male population.

• #30 Interstitial Cystitis: Practice Essentials, Background, Pathophysiology

  https://emedicine.medscape.com/article/2055505-overview

  Of patients with interstitial cystitis, 94% are White and approximately 90% are female. Interstitial cystitis appears to be slightly more common in Jewish women. The condition is also dramatically under-reported in men. There is significant overlap of symptoms of IC/BPS and symptoms of patients with chronic prostatitis/chronic pelvic pain syndrome. In fact, 17% of men were reported to have symptoms of both complexes. This supports the hypothesis that IC/BPS and chronic prostatitis/chronic pelvic pain syndrome share a common pathophysiology in men. However, many of these studies rely on the patient’s self-reported symptoms, so estimates of incidence in men are likely higher than previously reported. […] Median age at presentation is 40 years. However, Close et al have shown that interstitial cystitis may occur in children. In their series, the median age of onset was 4.5 years, with a mean age of diagnosis of 8.2 years. The children had diffuse glomerulations and terminal hematuria. Of the 16 children in the study, 15 improved after bladder hydrodistention.

• #31 Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) – American Urological Association

  https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022)

  Typical Course and Comorbidities […] IC/BPS is most commonly diagnosed in individuals over 40, although the diagnosis may be delayed depending upon the index of suspicion for the disease, and the criteria used to diagnose it. For instance, in European studies, where more strict criteria are typically used to make the diagnosis, the mean age is older than is typical for the US. A history of a recent culture-proven urinary tract infection (UTI) can be identified on presentation in 18-36% of women, although subsequent cultures are negative. Initially it is not uncommon for patients to report a single symptom such as dysuria, frequency, or pain, with subsequent progression to multiple symptoms. Symptom flares, during which symptoms suddenly intensify for several hours, days, or weeks, are not uncommon. There is a high rate of prior pelvic surgery (especially hysterectomy) and levator ani pain in women with IC/BPS, suggesting that trauma or other local factors may contribute to symptoms. It is important to note, however, that the high incidence of other procedures such as hysterectomy or laparoscopy may be the result of a missed diagnosis and does not necessarily indicate that the surgical procedure itself is a contributing factor to symptoms. It is also common for IC/BPS to coexist with other unexplained medical conditions such as fibromyalgia, chronic fatigue syndrome, Sjogren’s syndrome, chronic headaches, and vulvodynia. These associations suggest that there may be a systemic dysregulation in some patients. Finally, patients with IC/BPS frequently exhibit mental health disorders such as depression and anxiety. While these symptoms may be reactive in some IC/BPS patients, there is also some evidence that there may be a common biologic mechanism involved. For instance, a link between IC/BPS and panic disorder has been suggested from genetic linkage studies.

• #32  Interstitial Cystitis Network  – Interstitial Cystitis Prevalence and Epidemiology

  https://www.icnetwork.org/interstitial-cystitis-prevalence-epidemiology/

  IC/BPS affects millions of men and women around the world. In the USA alone, the impact of IC is profound. […] Two RAND prevalence studies (1,2) found that: 3.2 to 7.9 million women (2.7 to 6.5% of all women) […] 1 to 4 million men* have symptoms of IC. […] Quite a few epidemiological studies have been done over the years.(3-7) They have found that: […] The average age of onset for IC is 40 years, with 25% of patients under the age of 30. A late deterioration of symptoms is unusual. […] Patients with IC are 10 to 12 times more likely to report childhood bladder problems. […] Patients with IC are twice as likely report a history of urinary tract infection; however, over half of all IC patients report fewer than one such infection per year before the onset of IC. […] IC patients have suicidal thoughts 3-4 times above the national average. […] The quality of life of IC patients is worse than patients experiencing chronic renal failure and undergoing dialysis.

• #33 Interstitial Cystitis/Bladder Pain Syndrome – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK570588/

  In terms of age groups, the most common prevalence was in women between 50 to 59 years of age and men between 56 to 74 years of age. […] IC/BPS has an estimated prevalence of 3 million to 8 million women and 1 million to 4 million men in the US. […] The number of men affected is probably underestimated, as many are misdiagnosed as having chronic prostatitis. […] Investigations have noted a female predisposition, with 1 study in the US finding a 5 to 1 ratio. […] A study in the Netherlands quoted a prevalence as low as 8 to 16 out of 100,000 individuals. […] It is estimated that IC/BPS affects up to 400,000 patients in the UK, with almost 90% being women between 50 to 69 years of age. […] The data for children affected by IC/BPS is poor, but the consensus is that the prevalence is very low in the pediatric population.

• #34 Interstitial Cystitis/Bladder Pain Syndrome | Treatment & Management | Point of Care

  https://www.statpearls.com/point-of-care/132252

  Due to the nature of IC/BPS, it is very difficult to formulate a clear early diagnosis, and no accepted screening tool exists. Therefore, the data surrounding its prevalence remains limited. […] Based on a large population, questionnaire-based prevalence study in the US, 2.7% of women and 1.9% of men met the specified criteria. […] Other studies have estimated the prevalence at 6% with a higher incidence in women. […] In terms of age groups, the most common prevalence was in women between 50 to 59 years of age and men between 56 to 74 years of age. […] IC/BPS has an estimated prevalence of 3 million to 8 million women and 1 million to 4 million men in the US. […] The number of men affected is probably underestimated, as many are misdiagnosed as having chronic prostatitis. […] Investigations have noted a female predisposition, with 1 study in the US finding a 5 to 1 ratio.

• #35 Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) – American Urological Association

  https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022)

  IC/BPS Symptoms […] Multiple studies have estimated the prevalence of IC/BPS symptoms, using a variety of different case definitions. A mailed questionnaire study to 1,331 Finnish women aged 17-71 identified probable IC/BPS symptoms in 0.45%. Another questionnaire mailing study to enrollees aged 25-80 in a managed care population in the US Pacific Northwest identified IC/BPS symptoms in 6-11% of women and 25% of men, depending on the definition used. Investigators in the Boston Area Community Health study conducted door-to-door interviews about urologic symptoms in a sample of Black, Hispanic and White individuals aged 30-79. They identified IC/BPS symptoms using six different definitions, which yielded prevalence estimates ranging from 0.6% to 2.0%. Across these definitions, symptoms were typically two to three times as common in women as men, but no clear variations were observed by race/ethnicity. Questions about IC/BPS symptoms were included in the 2004 version of the US Nurses Health Study (NHS), which was administered to women aged 58 to 83 years. In this cohort of women, the prevalence of IC/BPS symptoms was 2.3%. The prevalence increased with age, from 1.7% of those younger than 65 years up to 4.0% in women aged 80 years or older. In a study of 981 Austrian women aged 19-89 at a voluntary health screening project in Vienna, the prevalence of IC/BPS symptoms was determined to be 0.3% (306 per 100,000).

• #36 Interstitial Cystitis: Practice Essentials, Background, Pathophysiology

  https://emedicine.medscape.com/article/2055505-overview

  Of patients with interstitial cystitis, 94% are White and approximately 90% are female. Interstitial cystitis appears to be slightly more common in Jewish women. The condition is also dramatically under-reported in men. There is significant overlap of symptoms of IC/BPS and symptoms of patients with chronic prostatitis/chronic pelvic pain syndrome. In fact, 17% of men were reported to have symptoms of both complexes. This supports the hypothesis that IC/BPS and chronic prostatitis/chronic pelvic pain syndrome share a common pathophysiology in men. However, many of these studies rely on the patient’s self-reported symptoms, so estimates of incidence in men are likely higher than previously reported. […] Median age at presentation is 40 years. However, Close et al have shown that interstitial cystitis may occur in children. In their series, the median age of onset was 4.5 years, with a mean age of diagnosis of 8.2 years. The children had diffuse glomerulations and terminal hematuria. Of the 16 children in the study, 15 improved after bladder hydrodistention.

• #37 Bladder pain

  https://womenshealth.gov/a-z-topics/bladder-pain

  Bladder pain syndrome affects more women than men. Between 3 million and 8 million women in the United States may have bladder pain syndrome. Some studies show that white women are more likely to have bladder pain syndrome compared to other racial and ethnic groups. Studies show that bladder pain can happen at any age, but symptoms may be different depending on your age. […] Bladder pain syndrome is often mistaken for a urinary tract infection (UTI), also called a bladder infection. But bladder pain syndrome and UTIs are not the same health problem. […] Researchers arent sure exactly what causes bladder pain syndrome. But some women are more at risk than others. Your risk for having bladder pain syndrome is higher if you had a bladder infection. Your bladder is lined with cells that protect your bladder from bacteria (germs) in urine. A bladder infection can damage this lining and cause irritation. […] Some women find that their bladder pain symptoms get better during pregnancy. Others find their symptoms get worse. During pregnancy, you need to urinate more often and are at higher risk for urinary tract infections and constipation. This can make symptoms worse for some women.

• #38 Prevalence of Symptoms of Bladder Pain Syndrome/Interstitial Cystitis Among Adult Females in the United States

  https://pmc.ncbi.nlm.nih.gov/articles/PMC3513327/

  While we did not observe significant differences by race/ethnicity using the high sensitivity definition, we did observe that, using the high specificity definition, the prevalence for white females was significantly higher than for black or Hispanic females, although we have no explanation for this finding. […] Less than half of the women had any diagnosis for their symptoms and only a tenth had a diagnosis of BPS/IC. This may indicate that these symptoms are generally under-addressed in medical practice, and that the condition BPS/IC may be underdiagnosed and under-addressed in treatment.

• #39 Interstitial Cystitis/Bladder Pain Syndrome – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK570588/

  In terms of age groups, the most common prevalence was in women between 50 to 59 years of age and men between 56 to 74 years of age. […] IC/BPS has an estimated prevalence of 3 million to 8 million women and 1 million to 4 million men in the US. […] The number of men affected is probably underestimated, as many are misdiagnosed as having chronic prostatitis. […] Investigations have noted a female predisposition, with 1 study in the US finding a 5 to 1 ratio. […] A study in the Netherlands quoted a prevalence as low as 8 to 16 out of 100,000 individuals. […] It is estimated that IC/BPS affects up to 400,000 patients in the UK, with almost 90% being women between 50 to 69 years of age. […] The data for children affected by IC/BPS is poor, but the consensus is that the prevalence is very low in the pediatric population.

• #40 Interstitial Cystitis/Bladder Pain Syndrome | Treatment & Management | Point of Care

  https://www.statpearls.com/point-of-care/132252

  A study in the Netherlands quoted a prevalence as low as 8 to 16 out of 100,000 individuals. […] It is estimated that IC/BPS affects up to 400,000 patients in the UK, with almost 90% being women between 50 to 69 years of age. […] The data for children affected by IC/BPS is poor, but the consensus is that the prevalence is very low in the pediatric population.

• #41 Painful Bladder Syndrome (Interstitial Cystitis) | Doctor

  https://patient.info/doctor/interstitial-cystitispainful-bladder-syndrome-pro

  PBS is a diagnosis of exclusion with no definitive diagnostic test. Therefore it is difficult to estimate prevalence, which can be dependent on whether symptoms are clinician-assigned or patient-reported. A large American study found prevalence rates of 2.3-6.5%. However, a study in the Netherlands suggested a much lower prevalence of 0.008 – 0.016%. […] PBS is between two and five times more common in women than men. However, many women are often reluctant to seek treatment. […] The average age at diagnosis is 40 years. […] Prevalence is highest in women between 50 and 59 and men between 56 and 74. It is estimated that IC/BPS affects up to 400,000 patients in the UK, with almost 90% being women between 50 to 69 years of age. […] It is very rare in children.

• #42 Interstitial Cystitis: Practice Essentials, Background, Pathophysiology

  https://emedicine.medscape.com/article/2055505-overview

  Of patients with interstitial cystitis, 94% are White and approximately 90% are female. Interstitial cystitis appears to be slightly more common in Jewish women. The condition is also dramatically under-reported in men. There is significant overlap of symptoms of IC/BPS and symptoms of patients with chronic prostatitis/chronic pelvic pain syndrome. In fact, 17% of men were reported to have symptoms of both complexes. This supports the hypothesis that IC/BPS and chronic prostatitis/chronic pelvic pain syndrome share a common pathophysiology in men. However, many of these studies rely on the patient’s self-reported symptoms, so estimates of incidence in men are likely higher than previously reported. […] Median age at presentation is 40 years. However, Close et al have shown that interstitial cystitis may occur in children. In their series, the median age of onset was 4.5 years, with a mean age of diagnosis of 8.2 years. The children had diffuse glomerulations and terminal hematuria. Of the 16 children in the study, 15 improved after bladder hydrodistention.

• #43 Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) – American Urological Association

  https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022)

  Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) […] Epidemiology […] Since there is no objective marker to establish the presence of IC/BPS, studies to define its prevalence are difficult to conduct. Population-based prevalence studies of IC/BPS have used three methods: surveys that ask participants if they have ever been diagnosed with the condition (self-report studies); questionnaires administered to identify the presence of symptoms that are suggestive of IC/BPS (symptom assessments); and, administrative billing data used to identify the number of individuals in a population who have been diagnosed with IC/BPS (clinician diagnosis). Not surprisingly, the use of different methods yields widely disparate prevalence estimates. […] Self-Report Studies […] Two large-scale studies in the United States have utilized self-report to estimate the prevalence of IC/BPS. The first was conducted as part of the 1989 National Health Interview Survey (NHIS), and the second was part of the third National Health and Nutrition Examination Surveys (NHANES III), which was conducted between 1988 and 1994. The same definition of IC/BPS was used in both studies. Participants were asked, „Have you ever had symptoms of a bladder infection (such as pain in your bladder and frequent urination) that lasted more than 3 months?” Those who gave a positive response were then asked, „When you had this condition, were you told that you had interstitial cystitis or painful bladder syndrome?” An affirmative answer to both questions was considered to define the presence of IC/BPS. The prevalence estimates obtained from these two studies were virtually identical. In the NHIS, the overall prevalence was 500 per 100,000 population, and the prevalence in women was 865 per 100,000. In NHANES III, the prevalence was 470 per 100,000 population, including 60 per 100,000 men and 850 per 100,000 women. This equals approximately 83,000 men and 1.2 million women across the US.

• #44 Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) – American Urological Association

  https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022)

  Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) […] Epidemiology […] Since there is no objective marker to establish the presence of IC/BPS, studies to define its prevalence are difficult to conduct. Population-based prevalence studies of IC/BPS have used three methods: surveys that ask participants if they have ever been diagnosed with the condition (self-report studies); questionnaires administered to identify the presence of symptoms that are suggestive of IC/BPS (symptom assessments); and, administrative billing data used to identify the number of individuals in a population who have been diagnosed with IC/BPS (clinician diagnosis). Not surprisingly, the use of different methods yields widely disparate prevalence estimates. […] Self-Report Studies […] Two large-scale studies in the United States have utilized self-report to estimate the prevalence of IC/BPS. The first was conducted as part of the 1989 National Health Interview Survey (NHIS), and the second was part of the third National Health and Nutrition Examination Surveys (NHANES III), which was conducted between 1988 and 1994. The same definition of IC/BPS was used in both studies. Participants were asked, „Have you ever had symptoms of a bladder infection (such as pain in your bladder and frequent urination) that lasted more than 3 months?” Those who gave a positive response were then asked, „When you had this condition, were you told that you had interstitial cystitis or painful bladder syndrome?” An affirmative answer to both questions was considered to define the presence of IC/BPS. The prevalence estimates obtained from these two studies were virtually identical. In the NHIS, the overall prevalence was 500 per 100,000 population, and the prevalence in women was 865 per 100,000. In NHANES III, the prevalence was 470 per 100,000 population, including 60 per 100,000 men and 850 per 100,000 women. This equals approximately 83,000 men and 1.2 million women across the US.

• #45 Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) – American Urological Association

  https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022)

  Further information is provided in three additional papers that reported data from the RAND Interstitial Cystitis Epidemiology (RICE) study. One of the RICE study objectives was to develop an IC/BPS case definition for use in epidemiological studies that had known sensitivity and specificity for use in epidemiological studies. Berry et al. (2010) report findings from a literature review, a structured expert panel process, and a telephone interview validation study to derive an IC/BPS definition. The authors note that none of the existing epidemiological definitions had high sensitivity or high specificity. As a result of this process, two definitions emerged. One with high sensitivity that correctly identified IC/BPS cases 81% of the time (with 54% specificity) and one with high specificity that correctly excluded non-IC/BPS cases 83% of the time (with 48% sensitivity). The definitions are captured in an 11-item questionnaire. See Table 2 for definitions; the Panel notes that these are epidemiological case definitions and are not appropriate for use as diagnostic criteria.

• #46 Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) – American Urological Association

  https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022)

  Table 2: RICE BPS/IC Case Definitions […] Berry et al. (2011) used the questionnaire to determine prevalence of IC/BPS among adult females in the US. This study yielded prevalence estimates of from 2.7% to 6.53% (approximately 3.3 to 7.9 million US women age 18 or older). Only 9.7% of women who met the definitions reported having been given an IC/BPS diagnosis. Suskind et al. (2013) modified the case definition for use in men and used an additional case definition derived from the NIH-Chronic Prostatitis Symptom Index to assess the prevalence and overlap between IC/BPS and chronic prostatitis/chronic pelvic pain syndrome in men (CP/CPPS). This study yielded a prevalence estimate of from 2.9% to 4.2% for IC/BPS and a prevalence of 1.8% for CP/CPPS. The overlap between the two syndromes was approximately 17%. The authors note that these findings suggest that the prevalence of IC/BPS in men approaches its prevalence in women; therefore, it may be greatly under-diagnosed in the male population.

• #47 Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) – American Urological Association

  https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022)

  Clinician Diagnosis […] Female participants in the NHS were asked by mailed questionnaires in 1994 and 1995 whether they had ever been diagnosed with 'interstitial cystitis (not urinary tract infection)’. In participants with a positive response, medical record reviews were performed to confirm a physician diagnosis, including cystoscopy performed by a urologist. Using these methods, the prevalence of IC/BPS was found to be 52/100,000 in the NHS I cohort, and 67/100,000 in the NHS II cohort. A subsequent study was performed using administrative billing data from the Kaiser Permanente Northwest managed care population in the Portland, Oregon metropolitan area. Patients with IC/BPS were identified by the presence of ICD-9 code 595.1 (’interstitial cystitis’) in the electronic medical record, and the prevalence of the diagnosis was found to be 197 per 100,000 women and 41 per 100,000 men.

• #48 Interstitial Cystitis/Painful Bladder Syndrome: An Update for Clinicians

  https://www.medscape.org/viewarticle/535821_2

  The prevalence of IC/PBS has been thought to be about 60/100,000 affected adult American women, but recent studies suggest that prevalence may be substantially higher. […] The only known risk factors are age, gender, and family history. […] Several studies have indicated that patients with IC/PBS have higher than expected prevalences of non-bladder diseases, such as inflammatory bowel disease, irritable bowel syndrome, systemic lupus erythematosus, panic attacks, and fibromyalgia. […] The disease probably occurs in men, but this symptom-based diagnosis is difficult to distinguish from chronic prostatitis and benign prostatic hyperplasia.

• #49 Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) – American Urological Association

  https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022)

  Typical Course and Comorbidities […] IC/BPS is most commonly diagnosed in individuals over 40, although the diagnosis may be delayed depending upon the index of suspicion for the disease, and the criteria used to diagnose it. For instance, in European studies, where more strict criteria are typically used to make the diagnosis, the mean age is older than is typical for the US. A history of a recent culture-proven urinary tract infection (UTI) can be identified on presentation in 18-36% of women, although subsequent cultures are negative. Initially it is not uncommon for patients to report a single symptom such as dysuria, frequency, or pain, with subsequent progression to multiple symptoms. Symptom flares, during which symptoms suddenly intensify for several hours, days, or weeks, are not uncommon. There is a high rate of prior pelvic surgery (especially hysterectomy) and levator ani pain in women with IC/BPS, suggesting that trauma or other local factors may contribute to symptoms. It is important to note, however, that the high incidence of other procedures such as hysterectomy or laparoscopy may be the result of a missed diagnosis and does not necessarily indicate that the surgical procedure itself is a contributing factor to symptoms. It is also common for IC/BPS to coexist with other unexplained medical conditions such as fibromyalgia, chronic fatigue syndrome, Sjogren’s syndrome, chronic headaches, and vulvodynia. These associations suggest that there may be a systemic dysregulation in some patients. Finally, patients with IC/BPS frequently exhibit mental health disorders such as depression and anxiety. While these symptoms may be reactive in some IC/BPS patients, there is also some evidence that there may be a common biologic mechanism involved. For instance, a link between IC/BPS and panic disorder has been suggested from genetic linkage studies.

• #50  Interstitial Cystitis Network  – Interstitial Cystitis Prevalence and Epidemiology

  https://www.icnetwork.org/interstitial-cystitis-prevalence-epidemiology/

  IC/BPS affects millions of men and women around the world. In the USA alone, the impact of IC is profound. […] Two RAND prevalence studies (1,2) found that: 3.2 to 7.9 million women (2.7 to 6.5% of all women) […] 1 to 4 million men* have symptoms of IC. […] Quite a few epidemiological studies have been done over the years.(3-7) They have found that: […] The average age of onset for IC is 40 years, with 25% of patients under the age of 30. A late deterioration of symptoms is unusual. […] Patients with IC are 10 to 12 times more likely to report childhood bladder problems. […] Patients with IC are twice as likely report a history of urinary tract infection; however, over half of all IC patients report fewer than one such infection per year before the onset of IC. […] IC patients have suicidal thoughts 3-4 times above the national average. […] The quality of life of IC patients is worse than patients experiencing chronic renal failure and undergoing dialysis.

• #51  Interstitial Cystitis Network  – Interstitial Cystitis Prevalence and Epidemiology

  https://www.icnetwork.org/interstitial-cystitis-prevalence-epidemiology/

  IC/BPS affects millions of men and women around the world. In the USA alone, the impact of IC is profound. […] Two RAND prevalence studies (1,2) found that: 3.2 to 7.9 million women (2.7 to 6.5% of all women) […] 1 to 4 million men* have symptoms of IC. […] Quite a few epidemiological studies have been done over the years.(3-7) They have found that: […] The average age of onset for IC is 40 years, with 25% of patients under the age of 30. A late deterioration of symptoms is unusual. […] Patients with IC are 10 to 12 times more likely to report childhood bladder problems. […] Patients with IC are twice as likely report a history of urinary tract infection; however, over half of all IC patients report fewer than one such infection per year before the onset of IC. […] IC patients have suicidal thoughts 3-4 times above the national average. […] The quality of life of IC patients is worse than patients experiencing chronic renal failure and undergoing dialysis.

• #52 Bladder Pain Syndrome | GLOWM

  https://www.glowm.com/section-view/heading/Bladder%20Pain%20Syndrome/item/865

  Bladder pain syndrome/interstitial cystitis (BPS/IC) is a syndrome primarily based on symptoms of urgency, frequency, and pain in the bladder and/or pelvis. Current data show that the condition is much more prevalent than previously thought. BPS/IC is also a disorder of the pelvic floor occurring mostly (90%) in women. The prevalence of BPS/IC was estimated in the past at 18.1/100,000 women. Subsequent studies in 2002 indicated it was 450 per 100,000 (0.45%), and more recently it was 680 per 100,000 (0.68%) for a probable IC and 300 per 100,000 (0.3%) for a definite diagnosis of IC. A recent study of 981 urban females in Vienna showed an overall prevalence of 306 per 100,000 (0.3%), with the highest number in the 40-59 years age group. BPS/IC has also been reported in children and adolescents. In Japan the prevalence reported from a questionnaire survey of 300 major hospitals was only 2 per 100,000 patients. However, a recent epidemiological investigation in Japan found that 1.0% of the general population experienced bladder pain every day. There is some evidence of genetic predisposition; the prevalence of BPS/IC in first-degree relatives has been shown to be 17 times higher than in the general population. […] The syndrome is also exacerbated by the high incidence of other comorbid diseases including: allergies, asthma, atopic dermatitis, inflammatory bowel syndrome (IBS), systemic lupus erythematosus (SLE), Sjgrens syndrome, chronic fatigue syndrome, and fibromyalgia.

• #53 Interstitial cystitis/painful bladder syndrome: the influence of modern diagnostic criteria on epidemiology and on Internet search activity by the public – Davis – Translational Andrology and Urology

  https://tau.amegroups.org/article/view/6804/html

  Due to the aforementioned variations in diagnostic criteria of IC/PBS, epidemiological studies demonstrate varying statistics on prevalence. […] The prevalence increases to 1,431/100,000 for females with first-degree relatives IC/PBS which suggests a hereditary component. […] The prevalence of IC/PBS was as high as 2.6% in a cross-sectional study in Boston. […] IC/PBS is typically diagnosed in midlife but patients history may extend back to childhood. […] The prevalence of IC/PBS in the paediatric population is not known as the NIDDK criteria excludes IC/PBS in patients 18 years of age. […] The Internet is a useful tool for patients to gather information on medical conditions and over 80% of all Internet users in the USA use this application to access health information. […] IC/PBS is increasing in prevalence globally due to broader diagnostic criteria and patients are using online technologies to gather information on the condition, particularly in the developed world. […] As diagnostic criteria continue to broaden and become more inclusive it is likely that the prevalence of IC/PBS will continue to increase. Therefore, urologists are likely to be referred more patients with symptoms that are consistent with modernised IC/PBS diagnostic criteria.

• #54 Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) – American Urological Association

  https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022)

  Typical Course and Comorbidities […] IC/BPS is most commonly diagnosed in individuals over 40, although the diagnosis may be delayed depending upon the index of suspicion for the disease, and the criteria used to diagnose it. For instance, in European studies, where more strict criteria are typically used to make the diagnosis, the mean age is older than is typical for the US. A history of a recent culture-proven urinary tract infection (UTI) can be identified on presentation in 18-36% of women, although subsequent cultures are negative. Initially it is not uncommon for patients to report a single symptom such as dysuria, frequency, or pain, with subsequent progression to multiple symptoms. Symptom flares, during which symptoms suddenly intensify for several hours, days, or weeks, are not uncommon. There is a high rate of prior pelvic surgery (especially hysterectomy) and levator ani pain in women with IC/BPS, suggesting that trauma or other local factors may contribute to symptoms. It is important to note, however, that the high incidence of other procedures such as hysterectomy or laparoscopy may be the result of a missed diagnosis and does not necessarily indicate that the surgical procedure itself is a contributing factor to symptoms. It is also common for IC/BPS to coexist with other unexplained medical conditions such as fibromyalgia, chronic fatigue syndrome, Sjogren’s syndrome, chronic headaches, and vulvodynia. These associations suggest that there may be a systemic dysregulation in some patients. Finally, patients with IC/BPS frequently exhibit mental health disorders such as depression and anxiety. While these symptoms may be reactive in some IC/BPS patients, there is also some evidence that there may be a common biologic mechanism involved. For instance, a link between IC/BPS and panic disorder has been suggested from genetic linkage studies.

• #55 Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) – American Urological Association

  https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022)

  Conceptualizing IC/BPS […] It is not known whether IC/BPS is a primary bladder disorder or whether the bladder symptoms of IC/BPS are a secondary phenomena resulting from another cause. Converging data from several sources suggest, however, that IC/BPS can be conceptualized as a bladder pain disorder that is often associated with voiding symptomatology and other systemic chronic pain disorders. Specifically, IC/BPS may be a bladder disorder that is part of a more generalized systemic disorder, at least in a subset of patients. Initial observations suggesting this conceptualization were made by Clauw and colleagues (1997). He noted among chronic pelvic pain patients that other chronic overlapping pain conditions (COPCs) such as IC, IBS, chronic fatigue syndrome, and fibromyalgia tended to co-occur. More comprehensive studies conducted by the NIH-funded Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network found that 44% of IC/BPS patients had at least one additional COPC. IC/BPS patients with widespread pain had more severe urologic symptoms, worse psychosocial symptoms and functioning, poorer QoL, and a worsening symptom trajectory over time. Furthermore, IC/BPS patients displaying widespread pain showed multiple indications of central neurobiological pain sensitization, correlating with quantitative sensory testing, fMRI (functional magnetic resonance imaging), and inflammatory markers. These findings imply that there might be a common central pathogenesis and pathophysiology for these disorders. Considering these data, it has been suggested that IC/BPS is a member of a family of hypersensitivity disorders which affects the bladder and other somatic/visceral organs, and has many overlapping symptoms and pathophysiology. An additional hypothesis is that IC/BPS might be just a part of the continuum of painful versus non-painful overactive bladder syndrome.

• #56 Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) – American Urological Association

  https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022)

  Typical Course and Comorbidities […] IC/BPS is most commonly diagnosed in individuals over 40, although the diagnosis may be delayed depending upon the index of suspicion for the disease, and the criteria used to diagnose it. For instance, in European studies, where more strict criteria are typically used to make the diagnosis, the mean age is older than is typical for the US. A history of a recent culture-proven urinary tract infection (UTI) can be identified on presentation in 18-36% of women, although subsequent cultures are negative. Initially it is not uncommon for patients to report a single symptom such as dysuria, frequency, or pain, with subsequent progression to multiple symptoms. Symptom flares, during which symptoms suddenly intensify for several hours, days, or weeks, are not uncommon. There is a high rate of prior pelvic surgery (especially hysterectomy) and levator ani pain in women with IC/BPS, suggesting that trauma or other local factors may contribute to symptoms. It is important to note, however, that the high incidence of other procedures such as hysterectomy or laparoscopy may be the result of a missed diagnosis and does not necessarily indicate that the surgical procedure itself is a contributing factor to symptoms. It is also common for IC/BPS to coexist with other unexplained medical conditions such as fibromyalgia, chronic fatigue syndrome, Sjogren’s syndrome, chronic headaches, and vulvodynia. These associations suggest that there may be a systemic dysregulation in some patients. Finally, patients with IC/BPS frequently exhibit mental health disorders such as depression and anxiety. While these symptoms may be reactive in some IC/BPS patients, there is also some evidence that there may be a common biologic mechanism involved. For instance, a link between IC/BPS and panic disorder has been suggested from genetic linkage studies.

• #57 Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) – American Urological Association

  https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022)

  Conceptualizing IC/BPS […] It is not known whether IC/BPS is a primary bladder disorder or whether the bladder symptoms of IC/BPS are a secondary phenomena resulting from another cause. Converging data from several sources suggest, however, that IC/BPS can be conceptualized as a bladder pain disorder that is often associated with voiding symptomatology and other systemic chronic pain disorders. Specifically, IC/BPS may be a bladder disorder that is part of a more generalized systemic disorder, at least in a subset of patients. Initial observations suggesting this conceptualization were made by Clauw and colleagues (1997). He noted among chronic pelvic pain patients that other chronic overlapping pain conditions (COPCs) such as IC, IBS, chronic fatigue syndrome, and fibromyalgia tended to co-occur. More comprehensive studies conducted by the NIH-funded Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network found that 44% of IC/BPS patients had at least one additional COPC. IC/BPS patients with widespread pain had more severe urologic symptoms, worse psychosocial symptoms and functioning, poorer QoL, and a worsening symptom trajectory over time. Furthermore, IC/BPS patients displaying widespread pain showed multiple indications of central neurobiological pain sensitization, correlating with quantitative sensory testing, fMRI (functional magnetic resonance imaging), and inflammatory markers. These findings imply that there might be a common central pathogenesis and pathophysiology for these disorders. Considering these data, it has been suggested that IC/BPS is a member of a family of hypersensitivity disorders which affects the bladder and other somatic/visceral organs, and has many overlapping symptoms and pathophysiology. An additional hypothesis is that IC/BPS might be just a part of the continuum of painful versus non-painful overactive bladder syndrome.

• #58 Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) – American Urological Association

  https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022)

  Impact on Psychosocial Functioning and Quality of Life […] The effects of IC/BPS on psychosocial functioning and QoL are pervasive and insidious, damaging work life, psychological well-being, personal relationships and general health. QoL is poorer in IC/BPS patients than in controls. Rates of depression are also higher. In addition, IC/BPS patients have significantly more pain, sleep dysfunction, catastrophizing, depression, anxiety, stress, social functioning difficulties and sexual dysfunction than do non-IC/BPS age-matched women. The impact of IC/BPS on QoL is as severe as that of rheumatoid arthritis and end-stage renal disease. Health-related QoL in women with IC/BPS is worse than that of women with endometriosis, vulvodynia or OAB. Given that IC/BPS causes considerable morbidity over the course of a patient’s life and loss of work during their most productive years, significant negative psychological and QoL impacts are not surprising.

• #59 Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) – American Urological Association

  https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022)

  Cost […] Quantifying the economic burden of IC/BPS on the American health care system is difficult because of the lack of an objective marker for diagnosis, resulting in uncertainty regarding its true prevalence. Direct costs associated with IC/BPS are incurred through physician visits, prescription medications, outpatient procedures, and hospitalization. These costs are greater than the mean annual per-person direct costs of diabetes mellitus, depression, hypertension, and asthma. They are also more consistent across geographic regions of the United States than other urologic conditions. Because of the chronicity of the condition, these costs typically persist over years. The indirect costs of IC/BPS, including time away from work and lost productivity while working, are particularly significant since the condition primarily affects working age adults, and especially women aged 25-50 years. The psychosocial costs such as social, educational and career related activities not pursued, as well as the emotional distress, depression, social isolation, and diminished QoL have not been measured, but are almost certainly substantial. Analysis of data extracted from multiple databases, including the Centers for Medicare and Medicaid Services, National Center for Health Statistics, Medical Expenditure Panel Survey, NHANES, Department of Veterans Affairs, National Association of Children’s Hospitals and Related Institutions, and various private data sets between 1994 and 2000 revealed an increase of 29% from $37 to $66 million among persons with a formal diagnosis of IC/BPS. Similarly, the direct annual costs associated with BPS rose from $481 million to $750 million (amounts standardized to 1996-1998 values). Between 1992 and 2001 the rate of visits to physician’s offices increased three-fold and the rate of visits to hospital outpatient visits increased two-fold. Only the rate of ambulatory surgery visits declined during this period, which may be attributed to a shift to diagnosis based on a symptom-based approach rather than the more traditional procedure-based diagnostic evaluation. While these findings are thought to reflect an increased awareness and diagnosis of IC/BPS, existing evidence reveals that more than 92% of office visits among patients with a diagnosis of IC/BPS were to urologists. In contrast, visits attributed to IC/BPS are found under a variety of less specific codes including urinary frequency, other specified symptoms associated with female genital organs, or other unspecified symptoms associated with the female genital organs. These findings suggest that misdiagnosis and under-diagnosis remain common, especially in the primary care setting. […] false

• #60 Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) – American Urological Association

  https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022)

  Impact on Psychosocial Functioning and Quality of Life […] The effects of IC/BPS on psychosocial functioning and QoL are pervasive and insidious, damaging work life, psychological well-being, personal relationships and general health. QoL is poorer in IC/BPS patients than in controls. Rates of depression are also higher. In addition, IC/BPS patients have significantly more pain, sleep dysfunction, catastrophizing, depression, anxiety, stress, social functioning difficulties and sexual dysfunction than do non-IC/BPS age-matched women. The impact of IC/BPS on QoL is as severe as that of rheumatoid arthritis and end-stage renal disease. Health-related QoL in women with IC/BPS is worse than that of women with endometriosis, vulvodynia or OAB. Given that IC/BPS causes considerable morbidity over the course of a patient’s life and loss of work during their most productive years, significant negative psychological and QoL impacts are not surprising.

• #61 Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) – American Urological Association

  https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022)

  Impact on Psychosocial Functioning and Quality of Life […] The effects of IC/BPS on psychosocial functioning and QoL are pervasive and insidious, damaging work life, psychological well-being, personal relationships and general health. QoL is poorer in IC/BPS patients than in controls. Rates of depression are also higher. In addition, IC/BPS patients have significantly more pain, sleep dysfunction, catastrophizing, depression, anxiety, stress, social functioning difficulties and sexual dysfunction than do non-IC/BPS age-matched women. The impact of IC/BPS on QoL is as severe as that of rheumatoid arthritis and end-stage renal disease. Health-related QoL in women with IC/BPS is worse than that of women with endometriosis, vulvodynia or OAB. Given that IC/BPS causes considerable morbidity over the course of a patient’s life and loss of work during their most productive years, significant negative psychological and QoL impacts are not surprising.

• #62 Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) – American Urological Association

  https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022)

  Impact on Psychosocial Functioning and Quality of Life […] The effects of IC/BPS on psychosocial functioning and QoL are pervasive and insidious, damaging work life, psychological well-being, personal relationships and general health. QoL is poorer in IC/BPS patients than in controls. Rates of depression are also higher. In addition, IC/BPS patients have significantly more pain, sleep dysfunction, catastrophizing, depression, anxiety, stress, social functioning difficulties and sexual dysfunction than do non-IC/BPS age-matched women. The impact of IC/BPS on QoL is as severe as that of rheumatoid arthritis and end-stage renal disease. Health-related QoL in women with IC/BPS is worse than that of women with endometriosis, vulvodynia or OAB. Given that IC/BPS causes considerable morbidity over the course of a patient’s life and loss of work during their most productive years, significant negative psychological and QoL impacts are not surprising.

• #63  Interstitial Cystitis Network  – Interstitial Cystitis Prevalence and Epidemiology

  https://www.icnetwork.org/interstitial-cystitis-prevalence-epidemiology/

  IC/BPS affects millions of men and women around the world. In the USA alone, the impact of IC is profound. […] Two RAND prevalence studies (1,2) found that: 3.2 to 7.9 million women (2.7 to 6.5% of all women) […] 1 to 4 million men* have symptoms of IC. […] Quite a few epidemiological studies have been done over the years.(3-7) They have found that: […] The average age of onset for IC is 40 years, with 25% of patients under the age of 30. A late deterioration of symptoms is unusual. […] Patients with IC are 10 to 12 times more likely to report childhood bladder problems. […] Patients with IC are twice as likely report a history of urinary tract infection; however, over half of all IC patients report fewer than one such infection per year before the onset of IC. […] IC patients have suicidal thoughts 3-4 times above the national average. […] The quality of life of IC patients is worse than patients experiencing chronic renal failure and undergoing dialysis.

• #64 Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) – American Urological Association

  https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022)

  Cost […] Quantifying the economic burden of IC/BPS on the American health care system is difficult because of the lack of an objective marker for diagnosis, resulting in uncertainty regarding its true prevalence. Direct costs associated with IC/BPS are incurred through physician visits, prescription medications, outpatient procedures, and hospitalization. These costs are greater than the mean annual per-person direct costs of diabetes mellitus, depression, hypertension, and asthma. They are also more consistent across geographic regions of the United States than other urologic conditions. Because of the chronicity of the condition, these costs typically persist over years. The indirect costs of IC/BPS, including time away from work and lost productivity while working, are particularly significant since the condition primarily affects working age adults, and especially women aged 25-50 years. The psychosocial costs such as social, educational and career related activities not pursued, as well as the emotional distress, depression, social isolation, and diminished QoL have not been measured, but are almost certainly substantial. Analysis of data extracted from multiple databases, including the Centers for Medicare and Medicaid Services, National Center for Health Statistics, Medical Expenditure Panel Survey, NHANES, Department of Veterans Affairs, National Association of Children’s Hospitals and Related Institutions, and various private data sets between 1994 and 2000 revealed an increase of 29% from $37 to $66 million among persons with a formal diagnosis of IC/BPS. Similarly, the direct annual costs associated with BPS rose from $481 million to $750 million (amounts standardized to 1996-1998 values). Between 1992 and 2001 the rate of visits to physician’s offices increased three-fold and the rate of visits to hospital outpatient visits increased two-fold. Only the rate of ambulatory surgery visits declined during this period, which may be attributed to a shift to diagnosis based on a symptom-based approach rather than the more traditional procedure-based diagnostic evaluation. While these findings are thought to reflect an increased awareness and diagnosis of IC/BPS, existing evidence reveals that more than 92% of office visits among patients with a diagnosis of IC/BPS were to urologists. In contrast, visits attributed to IC/BPS are found under a variety of less specific codes including urinary frequency, other specified symptoms associated with female genital organs, or other unspecified symptoms associated with the female genital organs. These findings suggest that misdiagnosis and under-diagnosis remain common, especially in the primary care setting. […] false

• #65 Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) – American Urological Association

  https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022)

  Cost […] Quantifying the economic burden of IC/BPS on the American health care system is difficult because of the lack of an objective marker for diagnosis, resulting in uncertainty regarding its true prevalence. Direct costs associated with IC/BPS are incurred through physician visits, prescription medications, outpatient procedures, and hospitalization. These costs are greater than the mean annual per-person direct costs of diabetes mellitus, depression, hypertension, and asthma. They are also more consistent across geographic regions of the United States than other urologic conditions. Because of the chronicity of the condition, these costs typically persist over years. The indirect costs of IC/BPS, including time away from work and lost productivity while working, are particularly significant since the condition primarily affects working age adults, and especially women aged 25-50 years. The psychosocial costs such as social, educational and career related activities not pursued, as well as the emotional distress, depression, social isolation, and diminished QoL have not been measured, but are almost certainly substantial. Analysis of data extracted from multiple databases, including the Centers for Medicare and Medicaid Services, National Center for Health Statistics, Medical Expenditure Panel Survey, NHANES, Department of Veterans Affairs, National Association of Children’s Hospitals and Related Institutions, and various private data sets between 1994 and 2000 revealed an increase of 29% from $37 to $66 million among persons with a formal diagnosis of IC/BPS. Similarly, the direct annual costs associated with BPS rose from $481 million to $750 million (amounts standardized to 1996-1998 values). Between 1992 and 2001 the rate of visits to physician’s offices increased three-fold and the rate of visits to hospital outpatient visits increased two-fold. Only the rate of ambulatory surgery visits declined during this period, which may be attributed to a shift to diagnosis based on a symptom-based approach rather than the more traditional procedure-based diagnostic evaluation. While these findings are thought to reflect an increased awareness and diagnosis of IC/BPS, existing evidence reveals that more than 92% of office visits among patients with a diagnosis of IC/BPS were to urologists. In contrast, visits attributed to IC/BPS are found under a variety of less specific codes including urinary frequency, other specified symptoms associated with female genital organs, or other unspecified symptoms associated with the female genital organs. These findings suggest that misdiagnosis and under-diagnosis remain common, especially in the primary care setting. […] false

• #66 Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) – American Urological Association

  https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022)

  Cost […] Quantifying the economic burden of IC/BPS on the American health care system is difficult because of the lack of an objective marker for diagnosis, resulting in uncertainty regarding its true prevalence. Direct costs associated with IC/BPS are incurred through physician visits, prescription medications, outpatient procedures, and hospitalization. These costs are greater than the mean annual per-person direct costs of diabetes mellitus, depression, hypertension, and asthma. They are also more consistent across geographic regions of the United States than other urologic conditions. Because of the chronicity of the condition, these costs typically persist over years. The indirect costs of IC/BPS, including time away from work and lost productivity while working, are particularly significant since the condition primarily affects working age adults, and especially women aged 25-50 years. The psychosocial costs such as social, educational and career related activities not pursued, as well as the emotional distress, depression, social isolation, and diminished QoL have not been measured, but are almost certainly substantial. Analysis of data extracted from multiple databases, including the Centers for Medicare and Medicaid Services, National Center for Health Statistics, Medical Expenditure Panel Survey, NHANES, Department of Veterans Affairs, National Association of Children’s Hospitals and Related Institutions, and various private data sets between 1994 and 2000 revealed an increase of 29% from $37 to $66 million among persons with a formal diagnosis of IC/BPS. Similarly, the direct annual costs associated with BPS rose from $481 million to $750 million (amounts standardized to 1996-1998 values). Between 1992 and 2001 the rate of visits to physician’s offices increased three-fold and the rate of visits to hospital outpatient visits increased two-fold. Only the rate of ambulatory surgery visits declined during this period, which may be attributed to a shift to diagnosis based on a symptom-based approach rather than the more traditional procedure-based diagnostic evaluation. While these findings are thought to reflect an increased awareness and diagnosis of IC/BPS, existing evidence reveals that more than 92% of office visits among patients with a diagnosis of IC/BPS were to urologists. In contrast, visits attributed to IC/BPS are found under a variety of less specific codes including urinary frequency, other specified symptoms associated with female genital organs, or other unspecified symptoms associated with the female genital organs. These findings suggest that misdiagnosis and under-diagnosis remain common, especially in the primary care setting. […] false

• #67 Broaden Horizons: The Advancement of Interstitial Cystitis/Bladder Pain Syndrome

  https://www.mdpi.com/1422-0067/23/23/14594

  In contrast, the incidence rate of the disease in China is relatively low, with only 21.8–100 in 100,000 developing IC/BPS. […] IC/BPS is more common in women than men, with a female-to-male ratio in incidence rates of approximately five to one. […] Average annual healthcare costs following the diagnosis of IC/BPS are 2.0 to 2.4 times higher than in age-matched controls. […] The etiology of IC/BPS is not fully understood thus far; however, considerable evidence has shown that it involves a complex interplay of neurological, endocrine, immune and other mechanisms. […] The pathological mechanism of IC/BPS is undefined. […] The European Society for the Study of IC/BPS (ESSIC) proposed that IC/BPS could be typed based on cystoscopy after hydrodistension of the bladder and bladder biopsies.

• #68 Interstitial Cystitis and Chronic Pain Syndrome

  https://www.uspharmacist.com/article/interstitial-cystitis-and-chronic-pain-syndrome

  Interstitial cystitis (IC), also known as painful bladder syndrome (PBS), is more common than was previously thought; however, the disorder is difficult to diagnose and treat. […] IC/PBS is more common in women than in men. The only definitive risk factor for IC/PBS is female gender, with a female:male ratio of 10:1.1 In the United States, an estimated 3.3 million women aged 18 years and older have experienced pelvic pain or other urinary symptoms. An estimated 1.6 million men aged 30 years and older have persistent symptoms that are associated with PBS, such as pain upon bladder filling and pain relieved by bladder emptying.3 In 2000, the estimated medical expenditures associated with IC/PBS totaled $66 million.2

• #69 Prevalence of Symptoms of Bladder Pain Syndrome/Interstitial Cystitis Among Adult Females in the United States

  https://pmc.ncbi.nlm.nih.gov/articles/PMC3513327/

  Bladder pain syndrome/interstitial cystitis is a poorly understood condition that can cause serious disability. We provide the first population based symptom prevalence estimate to our knowledge among United States adult females. […] Based on the high sensitivity definition 6.53% (95% CI 6.28, 6.79) of women met symptom criteria. Based on the high specificity definition 2.70% (95% CI 2.53, 2.86) of women met the criteria. These percentages translated into 3.3 to 7.9 million United States women 18 years old or older with bladder pain syndrome/interstitial cystitis symptoms. […] Bladder pain syndrome/interstitial cystitis symptoms are widespread among United States women and associated with considerable disability. These results suggest bladder pain syndrome/interstitial cystitis may be underdiagnosed.

• #70 Prevalence of Symptoms of Bladder Pain Syndrome/Interstitial Cystitis Among Adult Females in the United States

  https://pmc.ncbi.nlm.nih.gov/articles/PMC3513327/

  While we did not observe significant differences by race/ethnicity using the high sensitivity definition, we did observe that, using the high specificity definition, the prevalence for white females was significantly higher than for black or Hispanic females, although we have no explanation for this finding. […] Less than half of the women had any diagnosis for their symptoms and only a tenth had a diagnosis of BPS/IC. This may indicate that these symptoms are generally under-addressed in medical practice, and that the condition BPS/IC may be underdiagnosed and under-addressed in treatment.

• #71 Interstitial Cystitis: Practice Essentials, Background, Pathophysiology

  https://emedicine.medscape.com/article/2055505-overview

  Reports from Europe indicate a prevalence of 18 cases per 100,000 women, whereas only 3-4 cases per 100,000 women are reported in Japan. The marked differences between these countries and the United States are likely due to differences in diagnostic criteria, varying from all-encompassing clinical criteria (eg, those from the National Institute of Diabetes Digestive Kidney Diseases [NIDDK] of the US National Institutes of Health) to very strict criteria based on a pathologic diagnosis. Epidemiologic studies are difficult, given the wide variability in which patients are identified as research subjects. Some studies ask individuals to self-identify, while others survey physicians who may be unfamiliar with IC/BPS. […] Using a validated IC/BPS case definition, Berry et al discovered that only 50% of women who met criteria for IC/BPS had been evaluated by a urologist and only 10% carried the diagnosis, which strengthens the argument that this disease is largely underreported.

• #72 Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) – American Urological Association

  https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022)

  Table 2: RICE BPS/IC Case Definitions […] Berry et al. (2011) used the questionnaire to determine prevalence of IC/BPS among adult females in the US. This study yielded prevalence estimates of from 2.7% to 6.53% (approximately 3.3 to 7.9 million US women age 18 or older). Only 9.7% of women who met the definitions reported having been given an IC/BPS diagnosis. Suskind et al. (2013) modified the case definition for use in men and used an additional case definition derived from the NIH-Chronic Prostatitis Symptom Index to assess the prevalence and overlap between IC/BPS and chronic prostatitis/chronic pelvic pain syndrome in men (CP/CPPS). This study yielded a prevalence estimate of from 2.9% to 4.2% for IC/BPS and a prevalence of 1.8% for CP/CPPS. The overlap between the two syndromes was approximately 17%. The authors note that these findings suggest that the prevalence of IC/BPS in men approaches its prevalence in women; therefore, it may be greatly under-diagnosed in the male population.

• #73 Interstitial Cystitis: Urgency and Frequency Syndrome | AAFP

  https://www.aafp.org/pubs/afp/issues/2001/1001/p1199.html

  Interstitial cystitis may affect as many as 700,000 women in the United States. Data from the Nurses’ Health Study suggest that the prevalence of interstitial cystitis among women is about 67 per 100,000 and 52 per 100,000. […] Women make up 90 percent of patients with interstitial cystitis, while men comprise the remaining 10 percent. Children can also have interstitial cystitis. Urinary frequency, sensory urgency and lower abdominal pain are common symptoms among children with the disease. […] The onset of interstitial cystitis usually occurs between 30 and 70 years of age, with a median age of 43. The prevalence of the disease appears to be increasing among young and middle-aged women. […] Most patients consult at least five physicians, including psychiatrists, over a period of more than four years before interstitial cystitis is diagnosed. Symptomatic patients require considerably more medical care than their age-matched cohorts.

• #74 Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) – American Urological Association

  https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022)

  Cost […] Quantifying the economic burden of IC/BPS on the American health care system is difficult because of the lack of an objective marker for diagnosis, resulting in uncertainty regarding its true prevalence. Direct costs associated with IC/BPS are incurred through physician visits, prescription medications, outpatient procedures, and hospitalization. These costs are greater than the mean annual per-person direct costs of diabetes mellitus, depression, hypertension, and asthma. They are also more consistent across geographic regions of the United States than other urologic conditions. Because of the chronicity of the condition, these costs typically persist over years. The indirect costs of IC/BPS, including time away from work and lost productivity while working, are particularly significant since the condition primarily affects working age adults, and especially women aged 25-50 years. The psychosocial costs such as social, educational and career related activities not pursued, as well as the emotional distress, depression, social isolation, and diminished QoL have not been measured, but are almost certainly substantial. Analysis of data extracted from multiple databases, including the Centers for Medicare and Medicaid Services, National Center for Health Statistics, Medical Expenditure Panel Survey, NHANES, Department of Veterans Affairs, National Association of Children’s Hospitals and Related Institutions, and various private data sets between 1994 and 2000 revealed an increase of 29% from $37 to $66 million among persons with a formal diagnosis of IC/BPS. Similarly, the direct annual costs associated with BPS rose from $481 million to $750 million (amounts standardized to 1996-1998 values). Between 1992 and 2001 the rate of visits to physician’s offices increased three-fold and the rate of visits to hospital outpatient visits increased two-fold. Only the rate of ambulatory surgery visits declined during this period, which may be attributed to a shift to diagnosis based on a symptom-based approach rather than the more traditional procedure-based diagnostic evaluation. While these findings are thought to reflect an increased awareness and diagnosis of IC/BPS, existing evidence reveals that more than 92% of office visits among patients with a diagnosis of IC/BPS were to urologists. In contrast, visits attributed to IC/BPS are found under a variety of less specific codes including urinary frequency, other specified symptoms associated with female genital organs, or other unspecified symptoms associated with the female genital organs. These findings suggest that misdiagnosis and under-diagnosis remain common, especially in the primary care setting. […] false

• #75 Interstitial cystitis: Simplified diagnosis and treatment

  https://www.contemporaryobgyn.net/view/interstitial-cystitis-simplified-diagnosis-and-treatment

  Interstitial cystitis/bladder pain syndrome (IC/BPS) is now recognized as a common etiology in women with chronic pelvic pain. The prevalence of this syndrome ranges from 2.7% to 6.5%, which translates to between 3.3 and 7.9 million women in the United States. […] The true accuracy of this data is limited by the varying definitions of IC/BPS and the underdiagnosis of patients. […] In 1988, the National Institute of Diabetes and Digestion and Kidney Diseases (NIDDK) developed rigorous diagnostic criteria for research on IC. Unfortunately, these criteria became the de facto definition for diagnosis despite the controversy that many patients with IC symptoms lack classic cystoscopic findings (glomerulations or Hunners ulcers). It is estimated that the NIDDK criteria miss 60% of patients with IC.

• #76 Interstitial cystitis/painful bladder syndrome: the influence of modern diagnostic criteria on epidemiology and on Internet search activity by the public – Davis – Translational Andrology and Urology

  https://tau.amegroups.org/article/view/6804/html

  Interstitial cystitis/painful bladder syndrome (IC/PBS) is a chronic debilitating condition that is characterised by suprapubic pain and urinary symptoms such as urgency, nocturia and urinary frequency. The prevalence of the condition is increasing due to more inclusive diagnostic criteria. […] Prevalence rates for IC/PBS vary according to diagnostic criteria and range from 2% to 17.3% among the general population. Increased prevalence is associated with female gender and females with one first-degree relative affected. […] There has been an increase in global mean search activity for IC/PBS on an annual basis since 2005. The greatest increase in search activity was in USA, Canada, United Kingdom, Australia, Ireland and India respectively. […] As diagnostic criteria for IC/PBS continues to become more inclusive it is likely that the prevalence will continue to increase. This is particularly true for the USA and Canada as these regions have demonstrated the greatest increase in Internet search activity for IC/PBS.

• #77 Novel research approaches for interstitial cystitis/bladder pain syndrome: thinking beyond the bladder – Mullins – Translational Andrology and Urology

  https://tau.amegroups.org/article/view/7946/html

  Concurrent with attempts at defining biologic aspects, epidemiological studies have addressed IC/BPS definition, impact, course, and risk factors. For example, the Interstitial Cystitis Database (ICDB) Study revealed a greater heterogeneity in patient characteristics than previously thought. Both the RICE Study and BACH Survey developed improved case definitions for IC/BPS; more accurate estimates of prevalence; and further characterized symptoms, impact, and risk factors in community-based populations. Importantly, as noted a number of epidemiological studies have shown an association of conditions that share chronic pain as a major symptom with IC/BPS. […] The MAPP Research Network initiated in 2008 as a novel effort to address clinically relevant questions of natural history, patient phenotype, the relationship between associated pain conditions, and underlying mechanisms for urologic chronic pelvic pain syndrome (UCPPS). UCPPS is a term adopted by the MAPP Research Network to encompass both IC/BPS and CP/CPPS, which could be related based on overlapping symptoms. The MAPP Research Network has developed a highly collaborative and integrated research designs that views IC/BPS (in the larger context of UCPPS) as a systemic disorder involving not just the urologic system but also diverse non-urologic physiological systems and processes. Studies incorporate novel methodological approaches conducted by a broad range of investigators including urologists experienced with IC/BPS patients, as well as expertise in neurobiology, pain research, the microbiome, biomarker discovery and validation, animal model systems, epidemiology, psychology and psychosocial measures, immuno-biology, quantitative sensory testing, and many others. The Networks primary goal is to inform the design of future clinical studies/trials and ultimately to advance clinical care for patients.

• #78 Interstitial cystitis/painful bladder syndrome: the influence of modern diagnostic criteria on epidemiology and on Internet search activity by the public – Davis – Translational Andrology and Urology

  https://tau.amegroups.org/article/view/6804/html

  Interstitial cystitis/painful bladder syndrome (IC/PBS) is a chronic debilitating condition that is characterised by suprapubic pain and urinary symptoms such as urgency, nocturia and urinary frequency. The prevalence of the condition is increasing due to more inclusive diagnostic criteria. […] Prevalence rates for IC/PBS vary according to diagnostic criteria and range from 2% to 17.3% among the general population. Increased prevalence is associated with female gender and females with one first-degree relative affected. […] There has been an increase in global mean search activity for IC/PBS on an annual basis since 2005. The greatest increase in search activity was in USA, Canada, United Kingdom, Australia, Ireland and India respectively. […] As diagnostic criteria for IC/PBS continues to become more inclusive it is likely that the prevalence will continue to increase. This is particularly true for the USA and Canada as these regions have demonstrated the greatest increase in Internet search activity for IC/PBS.

• #79 Novel research approaches for interstitial cystitis/bladder pain syndrome: thinking beyond the bladder – Mullins – Translational Andrology and Urology

  https://tau.amegroups.org/article/view/7946/html

  Concurrent with attempts at defining biologic aspects, epidemiological studies have addressed IC/BPS definition, impact, course, and risk factors. For example, the Interstitial Cystitis Database (ICDB) Study revealed a greater heterogeneity in patient characteristics than previously thought. Both the RICE Study and BACH Survey developed improved case definitions for IC/BPS; more accurate estimates of prevalence; and further characterized symptoms, impact, and risk factors in community-based populations. Importantly, as noted a number of epidemiological studies have shown an association of conditions that share chronic pain as a major symptom with IC/BPS. […] The MAPP Research Network initiated in 2008 as a novel effort to address clinically relevant questions of natural history, patient phenotype, the relationship between associated pain conditions, and underlying mechanisms for urologic chronic pelvic pain syndrome (UCPPS). UCPPS is a term adopted by the MAPP Research Network to encompass both IC/BPS and CP/CPPS, which could be related based on overlapping symptoms. The MAPP Research Network has developed a highly collaborative and integrated research designs that views IC/BPS (in the larger context of UCPPS) as a systemic disorder involving not just the urologic system but also diverse non-urologic physiological systems and processes. Studies incorporate novel methodological approaches conducted by a broad range of investigators including urologists experienced with IC/BPS patients, as well as expertise in neurobiology, pain research, the microbiome, biomarker discovery and validation, animal model systems, epidemiology, psychology and psychosocial measures, immuno-biology, quantitative sensory testing, and many others. The Networks primary goal is to inform the design of future clinical studies/trials and ultimately to advance clinical care for patients.

• #80 Matched serum- and urine-derived biomarkers of interstitial cystitis/bladder pain syndrome | PLOS One

  https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0309815

  There is an unmet need to identify novel candidate disease biomarkers in serum or urine samples that are obtained by a minimally invasive procedure for diagnostic purposes and to provide insights into disease mechanisms. […] The overall aim of the present study was to identify serum and urine-derived biomarkers of IC/BPS that would provide additional insight into disease mechanisms and set the basis for further biomarker validation leading to improved diagnostic measures in IC/BPS. […] Our study included 12 female patients with IC/BPS and 12 healthy controls. […] We also discovered that serum levels of MMP9 correlate well with the disease severity and can be used to differentiate Hunner from non Hunner type of IC/BPS. […] Utilizing a comprehensive panel of both urine and serum biomarkers, identified here, holds promise for disease detection in IC/BPS patients.

• #81 Broaden Horizons: The Advancement of Interstitial Cystitis/Bladder Pain Syndrome

  https://www.mdpi.com/1422-0067/23/23/14594

  Since there are no sensitive and specific biomarkers for the diagnosis of IC/BPS, its diagnosis still poses challenges. […] The clinical signs of IC/BPS patients are nonspecific; nevertheless, suprapubic tenderness and bladder neck point tenderness are prevalent in both sexes. […] Cystoscopy can not only assist diagnosis but also can differentiate HIC from NHIC, which is helpful for the treatment, considering their different responses to therapy. […] Collectively, IC/BPS is a diagnosis of exclusion, and other known medical diseases must be ruled out before a diagnosis of IC/BPS is confirmed. […] The therapeutic goal is to relieve bladder pain, diminish urgency and frequency, and improve the quality of life (QoL) in patients. […] The UPOINT phenotypic classification system developed by Shoskes was recommended by CUA, EAU, and two clinical trials. […] AUA has advocated for the six-line treatment since 2011, which consequently boosts the hierarchical standard treatment for IC/BPS. […] Major surgeries are the final-line treatment for strictly selected patients with IC/BPS.

• #82 Difference in electron microscopic findings among interstitial cystitis/bladder pain syndrome with distinct clinical and cystoscopic characteristics | Scientific Reports

  https://www.nature.com/articles/s41598-021-96810-w

  Urothelial dysfunction may be a key pathomechanism underlying interstitial cystitis/bladder pain syndrome (IC/BPS). […] Although there are no standardized diagnostic criteria, estimated prevalence of IC/BPS ranges from 0.01 to 2.3%, with higher prevalence in females. […] In the United State, high-sensitivity assessment criteria have identified IC/BPS in 6.5% of females and 1.9% of males, while higher specificity assessments have still found IC/BPS in 2.7% of females and 1.9% of males. […] According to characteristic endoscopic findings and histopathology, IC/BPS can be been divided into Hunner-type IC (HIC) and non-Hunner-type IC (NHIC) subtypes. […] Several previous electron microscopy (EM) studies have described various ultrastructure changes in the bladder urothelium of IC/BPS patients, including defects in junctional complexes, epithelial cell pleomorphisms, loss of umbrella cells constituting the outer cell layer, loss of surface microvilli, and mast cell activation.

• #83 Novel research approaches for interstitial cystitis/bladder pain syndrome: thinking beyond the bladder – Mullins – Translational Andrology and Urology

  https://tau.amegroups.org/article/view/7946/html

  Concurrent with attempts at defining biologic aspects, epidemiological studies have addressed IC/BPS definition, impact, course, and risk factors. For example, the Interstitial Cystitis Database (ICDB) Study revealed a greater heterogeneity in patient characteristics than previously thought. Both the RICE Study and BACH Survey developed improved case definitions for IC/BPS; more accurate estimates of prevalence; and further characterized symptoms, impact, and risk factors in community-based populations. Importantly, as noted a number of epidemiological studies have shown an association of conditions that share chronic pain as a major symptom with IC/BPS. […] The MAPP Research Network initiated in 2008 as a novel effort to address clinically relevant questions of natural history, patient phenotype, the relationship between associated pain conditions, and underlying mechanisms for urologic chronic pelvic pain syndrome (UCPPS). UCPPS is a term adopted by the MAPP Research Network to encompass both IC/BPS and CP/CPPS, which could be related based on overlapping symptoms. The MAPP Research Network has developed a highly collaborative and integrated research designs that views IC/BPS (in the larger context of UCPPS) as a systemic disorder involving not just the urologic system but also diverse non-urologic physiological systems and processes. Studies incorporate novel methodological approaches conducted by a broad range of investigators including urologists experienced with IC/BPS patients, as well as expertise in neurobiology, pain research, the microbiome, biomarker discovery and validation, animal model systems, epidemiology, psychology and psychosocial measures, immuno-biology, quantitative sensory testing, and many others. The Networks primary goal is to inform the design of future clinical studies/trials and ultimately to advance clinical care for patients.

• #84 Interstitial Cystitis/Bladder Pain Syndrome – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK570588/

  Interstitial cystitis/bladder pain syndrome (IC/BPS) is a complex and chronic medical condition that primarily affects the urinary bladder, leading to a range of distressing symptoms. […] Interstitial cystitis remains challenging to diagnose and manage, as its precise causes are not fully understood, and it can mimic other urinary tract disorders. […] Due to the nature of IC/BPS, it is very difficult to formulate a clear early diagnosis, and no accepted screening tool exists. Therefore, the data surrounding its prevalence remains limited. […] Some studies have specifically looked into the epidemiology of IC/BPS. […] Based on a large population, questionnaire-based prevalence study in the US, 2.7% of women and 1.9% of men met the specified criteria. […] Other studies have estimated the prevalence at 6% with a higher incidence in women.

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