Sleep Apnea Increases IC Risk
Chung SD, Lin CC, Liu SP, Lin HC. Obstructive Sleep Apnea Increases the Risk of Bladder Pain Syndrome/Interstitial Cystitis: A Population-Based Matched-Cohort Study. Neurourol Urodyn. 2013 Mar 28. doi: 10.1002/nau.22401. [Epub ahead of print]
Researchers in Taiwan studied the impact of obstructive sleep apnea (OSA) on the risk of IC among 2,940 people with OSA and 29,400 randomly selected controls. During a 3-year follow up period, they found 13.61 incidences of IC among those with OSA and 3.6 incidences among those without OSA. After adjusting for diabetes, hypertension, coronary heart disease, obesity, hyperlipidemia, chronic pelvic pain, irritable bowel syndrome, fibromyalgia, chronic fatigue syndrome, depression, panic disorder, migraines, sicca syndrome, allergies, endometriosis, asthma, tobacco use disorder, and alcohol abuse, they determined that those with OSA are 3.71 times more likely to develop IC that those without OSA.
Neural Pain Processing May Be Linked to Vulvodynia
Hampson JP, Reed BD, Clauw DJ, Bhavsar R, Gracely RH, Haefner HK, Harris RE. Augmented Central Pain Processing in Vulvodynia. J Pain. 2013 Apr 8. pii: S1526-5900(13)00805-5. doi: 10.1016/j.jpain.2013.01.767. [Epub ahead of print]
Based on a study of brain activity among patients with and without vulvodynia, researchers at the University of Michigan think this condition may be linked to a central neural pathology. The study looked at pain-processing brain activity in response to pressure to the vulva and other parts of the body among 24 women with vulvodynia and 13 healthy, pain-free, age-matched controls. The study also included a positive control group of 24 women with fibromyalgia. Those with vulvodynia had greater activity than controls within the insula, dorsal midcingulate, posterior cingulate, and thalamus. Vulvodynia and fibromyalgia patients had overlapping activity in the insular regions of the brain in response to pressure. There was also brain activity in those with vulvodynia when areas remote from the vulva were stimulated, leading the researchers to suggest that a brain mechanism may be involved in this disorder.
Urogenital Sensitivity May Predict Vulvodynia
Reed BD, Payne CM, Harlow SD, Legocki LJ, Haefner HK, Sen A. Urogenital symptoms and pain history as precursors of vulvodynia: a longitudinal study. J Womens Health (Larchmt). 2012 Nov;21(11):1139-43. doi: 10.1089/jwh.2012.3566.
In an effort to determine who’s at risk for vulvodynia, researchers sent follow-up health surveys to 1,037 women in the Women’s Health Registry who had completed a baseline assessment in 2004. The follow-up surveys were sent 2- and 4-years after the original assessment, and were designed to identify women who met the criteria for vulvodynia. 723 women responded to one or both of the follow-up surveys. Among the 660 women who did not have a vulvodynia diagnosis in 2004, 71 (or 10 percent) of them developed it within the 4-year follow-up period, which amounts to an incidence rate of 3.1 percent per year. Women who had originally reported pain with intercourse or a history of short-term vulvar pain (called the intermediate phenotype in the study) were more likely to later meet the vulvodynia criteria than the women who originally did not have any current or past symptoms (called the strict control group). Among the strict controls, younger women had a greater risk of developing vulvodynia than older ones; for those with an intermediate phenotype, nonwhite women and those reporting pain with or after intercourse had a greater risk. The researchers conclude that it may be common for women to have general urogenital sensitivity before developing clinical vulvodynia.
Vulvodynia: Identifying Risk Factors Can Lead to Prevention
Nguyen RH. With the identification of a high-risk group for the development of vulvodynia comes an eye on prevention. J Womens Health (Larchmt). 2012 Nov;21(11):1130-1. doi: 10.1089/jwh.2012.3967.
Referencing the study above by Reed et al., Nguyen recommends using what we know about risk factors for vulvodynia to develop priorities in research and theories for prevention. If we know that women who show some component of vulvodynia—such as pain with first tampon insertion, vulvar burning, or burning with urination—are at high risk for developing diagnosable vulvodynia, then we need to be able to step in with means of preventing further disease development.
IC May Be Underdiagnosed in Men
Suskind AM, Berry SH, Ewing BA, Elliott MN, Suttorp MJ, Clemens JQ. 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. J Urol. 2013 Jan;189(1):141-5. doi: 10.1016/j.juro.2012.08.088. Epub 2012 Nov 16.
Using the RICE (RAND Interstitial Cystitis Epidemiology) study data, University of Michigan researchers looked for the prevalence of interstitial cystitis/bladder pain syndrome and chronic prostatitis/chronic pelvic pain syndrome in men, and found that symptoms of both are widespread among U.S. men. (Using weighted prevalence estimates, the numbers equate to 1,986,972 men with the criteria for CP and 2,107,727 for IC.) In fact, the incidence of IC symptoms among men approaches that of women, indicating that the condition may be underdiagnosed in American men.
Vulvodynia Linked to Presence of Multiple Pain Conditions
Reed BD, Harlow SD, Sen A, Edwards RM, Chen D, Haefner HK. Relationship between vulvodynia and chronic comorbid pain conditions. Obstet Gynecol. 2012 Jul;120(1):145-51.
According to a survey completed by 1,890 women participating in the Michigan Woman to Woman Health Study, those with vulvodynia are more likely than those without to also have fibromyalgia, interstitial cystitis (IC), and /or irritable bowel syndrome (IBS). Of the women surveyed, 7.5% screened positive for IC, 8.7% for vulvodynia, 9.4% for IBS, 11.8% for fibromyalgia, and 27.1% for multiple conditions. The presence of vulvodynia was associated with the presence of each of the other conditions, but only low socioeconomic status was associated with having multiple conditions at the same time.
Is IC One Part of a Diffuse Processing Disorder?
Chelimsky G, Heller E, Buffington CA, Rackley R, Zhang D, Chelimsky T. Co-morbidities of interstitial cystitis. Front Neurosci. 2012;6:114. Epub 2012 Aug 10.
This study looked at people with interstitial cystitis (IC) who also had central and autonomic nervous system disorders such as irritable bowel syndrome (IBS) fibromyalgia, and migraine. Participants included 26 people with physician-diagnosed IC, 58 people with IC symptoms based on an NIDDK questionnaire, and 48 healthy controls matched for age and socio-economic status. People in the IC groups also had digestive symptoms of IBS and dyspepsia (indigestion); sleep problems including difficulty falling asleep, feeling poorly refreshed in the morning, waking up before needed, and snoring; severe chronic fatigue, chronic generalized pain, migraines, and fainting. The findings mirror those of other studies showing links between IC and IBS, fibromyalgia, chronic pain, and migraine. Because of the high rates of fainting and dyspepsia in the IC groups as well, these researchers suggest further study into whether IC is part of a diffuse disorder of central, autonomic, and sensory processing that affects multiple organs outside the bladder.
What’s My Prognosis? Looking for Factors that Predict IC Severity
Warren JW, Clauw DJ, Langenberg P. Prognostic factors for recent-onset interstitial cystitis/painful bladder syndrome. BJU Int. 2012 Aug 9. Doi: 10.1111/j.1464-410X.2012.11422.x. [Epub ahead of print]
Little is known about the natural history of IC, so researchers at the Universities of Maryland and Michigan teamed up to look for baseline variables that predict how the disease might progress in newly diagnosed women. They identified 304 women who had been diagnosed within the previous 12 months and then, at set intervals, asked standardized questions about their symptoms in the past week. After a median of 33 months of follow-up, two prognostic variables were clear: mild symptoms at diagnosis, and chronic fatigue syndrome at diagnosis. Having mild symptoms when diagnosed with IC was associated with milder disease at the final follow-up; in comparison, having chronic fatigue syndrome when diagnosed was associated with more severe disease later.
Overactive Bladder Associated with Fibromyalgia
Chung JH, Kim SA, Choi BY, Lee HS, Lee SW, Kim TY, Lee TY, Moon HS. The association between overactive bladder and fibromyalgia syndrome: a community survey. Neurourol Urodyn. 2012 June 5. [Epub ahead of print]
In a survey of 920 adults over age 40, researchers in Korea found that those with fibromyalgia were significantly more likely to have symptoms of overactive bladder (frequency or urgency). The study used univariate and multivariate logistic regression analysis to evaluate the participants’ answers to a questionnaire; people with fibromyalgia were 3 times more likely to have OAB symptoms.
Reflux Linked to Increased Risk of IC
Kang JH, Keller JJ, Chen YK, Lin HC. Reflux esophagitis increased the risk of bladder pain syndrome/interstitial cystitis: A 3-year follow-up study. Neurourol Urodyn. 2012 June 5. [Epub ahead of print]
Researchers in Taiwan investigated the association between reflux esophagitis (RE) and BPS/IC and found that patients with RE were at higher risk of a future BPS/IC diagnosis. The study followed 8,962 women with RE and 44,810 controls for 3 years, using Cox proportional hazards regressions to estimate the risk. The incidence of BPS/IC in those with RE was greater than in those without RE (2.38 vs. 1.24 per 100-person years, respectively). After considering age group, urbanization level, and medical comorbidity, the researchers calculated the hazard ratio (the relative risk) of a future BPS/IC diagnosis among patients with RE to be 1.4, which indicates a greater risk for those with RE than those without it.
RICE Study Shows IC Is Underdiagnosed, Undertreated
Konkle KS, Berry SH, Elliott MN, Hilton L, Suttorp MJ, Clauw DJ, Clemens JQ. Comparison of an Interstitial Cystitis/Bladder Pain Syndrome Clinical Cohort With Symptomatic Community Women From the RAND Interstitial Cystitis Epidemiology Study. J Urol. 2011 Dec 14. [Epub ahead of print]
IC patients are not getting diagnosed and not getting treated, shows this comparison between women reporting symptoms in the large RAND Interstitial Cystitis Epidemiology (RICE) survey and women being treated by IC experts. Usually, chronic pain conditions are worse in patients who are being treated by experts than in those who aren’t going to experts or who aren’t seeing doctors at all for their condition. But that’s not the case with IC, this analysis demonstrates. The two groups are very similar. Both typically had had symptoms for about 14 years. Although the women being treated by experts had more pain in general and worse maximum pain, that difference was not large. Interstitial Cystitis Symptom Index scores were about 11 in both groups. There were differences, however. The patients being treated by experts had higher Interstitial Cystitis Problem Index scores (13.2 versus 9.9). They were also more likely to have irritable bowel syndrome (46.4 vs 22.0 percent), endometriosis (33.3 vs 17.1 percent), fibromyalgia (20.0 vs 11.2 percent), chronic fatigue syndrome (14.1 vs 6.3 percent), and vulvodynia (16.8 versus 0.4 percent). Those who were not being treated by experts were significantly more likely to have no insurance, to be Hispanic, and to report being unable to work or to be able to work full time. Both groups had been diagnosed and treated for overactive bladder at about the same rate, indicating that a share of women in the community may have been getting some form of treatment, but not necessarily IC-specific treatment. There was little difference between the women with symptoms in the community who met the broad definition of IC versus the more specific definition. This important study should serve as a call to action to improve IC diagnosis and access to IC-oriented treatment.
Pain Isn’t Simple
Davis JA, Robinson RL, Le TK, Xie J. Incidence and impact of pain conditions and comorbid illnesses. J Pain Res. 2011;4:331-345. Epub 2011 Oct 10.
This look into the health records of some 1.2 million patients in a large health-insurance plan showed that the pain picture is complex—with different burdens, different rates of co-occurring problems, and different costs. IC as “painful bladder syndrome” did not have the impact that some might expect. Painful bladder syndrome and migraine had the lowest illness severity among the pain conditions studied, which ranged from low back pain to HIV-associated pain and cancer pain. (The most severe were diabetic neuropathy, HIV-associated pain, and cancer pain.) Painful bladder syndrome also had the lowest rate of sleep disorders at 5.47 percent. (Multiple sclerosis pain had the highest at 11.59 percent.) Improved diagnosis of less severe IC, likely to be called “painful bladder syndrome,” might account for these findings.
IC Admissions Low in Japan
Sugihara T, Yasunaga H, Horiguchi H, Nakamura M, Nomiya A, Nishimatsu H, Matsuda S, Homma Y. Admissions related to interstitial cystitis in Japan: An estimation based on the Japanese Diagnosis Procedure Combination database. Int J Urol. 2011 Nov 1. doi: 10.1111/j.1442-2042.2011.02883.x. [Epub ahead of print]
Using claims information, the admission rate for IC in Japan is estimated to be 1.35 per 100,000 person years for women and 0.37 per 100,000 person years for men. The ratio of women to men was 3.69, and the median age was 67 years. The incidence is low compared with other reports, said the authors. That might have been because of racial differences, clinical examination methods, lack of outpatient data, and poor health-care coverage for IC, they speculated.
Vulvodynia Is Common, But Few Get Diagnosis
Reed BD, Harlow SD, Sen A, Legocki LJ, Edwards RM, Arato N, Haefner HK. Prevalence and demographic characteristics of vulvodynia in a population-based sample. Am J Obstet Gynecol. 2011 Aug 22. [Epub ahead of print]
One in 12 women has vulvodynia, and about a quarter of experience it at some time in their lives. Nearly half of women with symptoms seek treatment, but only a tiny percentage get a diagnosis. Those were the conclusions of this survey study of some 2,300 women in the metro Detroit area. More specifically, of the women who did have symptoms that met the criteria for vulvodynia, 48.6% sought treatment, but only 1.4% got a diagnosis. Although this study did not look at how often women with other related conditions got a vulvodynia diagnosis, the results may mean that women with IC, who often have vulvodynia, may not be getting all their pelvic pain symptoms addressed. So be sure to speak up and ask for medical help for vulvodynia and all your sources of pain.
IC Symptoms Differ with Age
Rais-Bahrami S, Friedlander JI, Herati AS, Sadek MA, Ruzimovsky M, Moldwin RM. Symptom profile variability of interstitial cystitis/painful bladder syndrome by age. BJU Int. 2011 Aug 24. doi: 10.1111/j.1464-410X.2011.10481.x. [Epub ahead of print]
Younger patients with IC often have a different set of symptoms from older patients—and that’s important now that more young patients are being diagnosed with IC. These clinicians analyzed the records of 268 patients they saw between 1990 and 2008. At the time of IC diagnosis, 60 patients were under 30 years old, 105 were 30 to 60 years old, and 103 were 60 years old or older. Few of the patients diagnosed at a young age (12 percent) had Hunner’s lesions, whereas 42 percent of the patients in the middle group and 40 percent of the patients in the oldest group did. Patients diagnosed at a young age had more urinary urgency, frequency, and pain with urination than the older groups. The rates of reported nocturia and urinary incontinence increased with age.
Pelvic Pain Rate High, Preventable in Brazilian City
Silva GP, Nascimento AL, Michelazzo D, Alves Junior FF, Rocha MG, Silva JC, Reis FJ, Nogueira AA, Poli Neto OB. High prevalence of chronic pelvic pain in women in Ribeirão Preto, Brazil and direct association with abdominal surgery. Clinics (Sao Paulo). 2011;66(8):1307-12.
Nearly 12 percent of women over the age of 14 in Ribeirão Preto, Brazil, have chronic pelvic pain, according to this study of 1,278 women treated in the public health system. The predictors of pelvic pain were pain with sex, previous abdominal surgery, depression, painful periods, anxiety, current sexual activity, low back pain, constipation, urinary symptoms, and low educational level. The authors said these conditions can usually be prevented, controlled, or resolved with improvements in public health policies and public education.
Patients without Hunner’s Patches Have More Chronic Conditions
Peters KM, Killinger KA, Mounayer MH, Boura JA. Are Ulcerative and Nonulcerative Interstitial Cystitis/Painful Bladder Syndrome 2 Distinct Diseases? A Study of Coexisting Conditions. Urology. 2011 Jun 22. [Epub ahead of print]
More IC patients without Hunner’s patches reported they had chronic conditions than patients who had Hunner’s patches. The chronic conditions included fibromyalgia, migraines, and temporomandibular joint disorder. Patients without Hunner’s patches also had higher scores on scales of symptom intensity and depression in this survey study. The study compared responses to a questionnaire from 178 women with IC who did not have Hunner’s patches, 36 women with IC who had them, and 425 controls. The patients with Hunner’s patches had worse daytime and nighttime frequency and had smaller bladder capacities than IC patients without Hunner’s patches. There were no differences between the groups of patients in their scores on the IC Symptom and Problem Indexes or on a bowel function questionnaire. It’s important to distinguish these subtypes of IC, concluded the authors.
IC Symptoms Are Widespread and Misdiagnosed
Berry SH, Elliott MN, Bogart LM, Stoto MA, Eggers P, Nyberg L, Clemens JQ. Prevalence of Symptoms of Bladder Pain Syndrome/Interstitial Cystitis Among Adult Females in the United States. J Urol. 2011 Aug;186(8):540-4.
The landmark RAND IC Epidemiology (RICE) study that showed the world how common IC may be has now been published. Presented as a poster at the American Urological Association meeting in 2009, this very large population study showed that IC is likely much more common than most experts thought. The published paper tells us, not only that, but also that only a small fraction of women with symptoms get a diagnosis, even though the impact on their lives is severe. This population based survey of nearly 150,000 US households looked for adult women with bladder symptoms that could be IC based on two different symptom-based definitions. One was very sensitive, that is, likely to identify everyone with IC but also many women who had other conditions. The other definition was very specific, that is, likely to include only women whom experts would say had IC and to exclude others. Based on the sensitive definition, the researchers estimated that 6.53 percent of US women had the symptoms, and based on the specific definition, the estimate was 2.70 percent. That works out to 3.3 to 7.9 million US women age 18 or older with IC symptoms.
The kicker is that only 9.7 percent of the women with symptoms got a diagnosis, despite the big impact on their daily life and mental health. That’s not for lack of seeing doctors. Among the women who met the highly specific definition, 87.1 percent saw an average of 3.5 doctors about their symptoms. And although 45.8 percent of these women said they got some specific diagnosis, only 9.9 percent got an IC diagnosis. Only 40.4 percent saw a urologist. This group of women also had physical functioning scores and mental health scores that were one standard deviation lower than average—meaning definitely lower to the point that we know they have considerable loss of function.
The news of the high prevalence has already prompted more research into treatments. Now, the news that few women are getting a diagnosis, despite the impact IC symptoms have on their lives, is a call to action for educating medical professionals about IC.
BACH Study Links Hysterectomy with IC
Link CL, Pulliam SJ, McKinlay JB. Hysterectomies and Urologic Symptoms: Results from the Boston Area Community Health (BACH) Survey. Female Pelvic Med Reconstr Surg. 2010 Jan;16(1):37-47.
This analysis of Boston Area Community Health (BACH) survey data shows a relationship between hysterectomy and IC symptoms. Of 3,202 women, 1,782 had urologic symptoms. Also, 587 of the women had undergone hysterectomy, which was done more often in minority and poorer women. Women who had undergone hysterectomy were more likely to get lower urinary tract symptoms, IC (or painful bladder syndrome), urinary frequency, urgency, and overactive bladder. The researchers pointed to urologic symptoms, including painful bladder symptoms, as a possible unintended consequence of a hysterectomy. You can read this article free here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3060564/?tool=pubmed
Kids and Teens Get IC and Need Treatment
Yoost JL, Hertweck SP, Loveless M. Diagnosis and Treatment of Interstitial Cystitis in Adolescents. J Pediatr Adolesc Gynecol. 2011 May 19. [Epub ahead of print]
With this article published in a journal aimed at the gynecologists who treat girls, these doctors took the important step of educating their colleagues that kids and teens get IC and need treatment. Diagnosis and treatment for young people isn’t easy, they said, because of strict diagnostic criteria (which are no longer so strict) and the dearth of studies on IC in people under 18. The authors outlined the symptoms and said that doctors can make the diagnosis based symptoms, physical exams, voiding diaries, and excluding other possible causes of the symptoms. They noted that potassium sensitivity testing and cystoscopy are invasive and “often impractical” in younger patients. Multimodal therapy should be tailored to each patient’s individual needs, wrote the authors, who mentioned oral medication, bladder instillation, cystoscopy with hydrodistention, and conservative approaches such as diet as treatments that may be appropriate and effective for this age group.
Rates of Depression, Panic Attacks High with IC
Watkins KE, Eberhart N, Hilton L, Suttorp MJ, Hepner KA, Clemens JQ, Berry SH. Depressive disorders and panic attacks in women with bladder pain syndrome/interstitial cystitis: a population-based sample. Gen Hosp Psychiatry. 2011 Mar-Apr;33(2):143-9. Epub 2011 Feb 18.
Women with IC suffer high rates of depression and panic attacks, showed the RAND Interstitial Cystitis Epidemiology (RICE) study, which is based on a survey of nearly 150,000 households. Among 1,469 women who met the symptom criteria for IC, more than a third (536) had a probable diagnosis of depression, and a little more than half (776) reported recent panic attacks. (The National Institute of Mental Health estimates the rate of depression among US adults to be 6.7 percent in any one year and 16.5 percent over a lifetime. For panic disorder, the corresponding rates are 2.7 and 4.7 percent.) With either condition, the women reported worse functioning and increased pain and were less likely to work because of bladder pain. These findings show that there is an unmet need for treatment. Clinicians who see patients seeking treatment for depression or anxiety need to be alert to bladder pain, and those who treat IC symptoms should be alert to emotional or personal problems, concluded the authors.
IC Reported in 12-year-old Girl
Walid MS, Heaton RL. Interstitial cystitis and endometriosis in a 12-year-old girl. Arch Gynecol Obstet. 2010 Dec 19. [Epub ahead of print]
Screen for IC in young girls with endometriosis and for endometriosis in young girls with IC, urge these gynecologists. They reported on a case of a 12-year-old girl who had both conditions. IC, they said, is underestimated in girls.
You Know It’s Your Bladder Because . . .
Warren JW, Diggs C, Horne L, Greenberg P. Interstitial Cystitis/Painful Bladder Syndrome: What Do Patients Mean By “Perceived” Bladder Pain? Urology. 2010 Dec 10. [Epub ahead of print]
IC patients have different reasons for thinking that their pain comes from the bladder. Among the 179 patients with current pain in the Events Preceding IC (EPIC) study, 41 percent said their pain feels like it’s coming from the area of the bladder and 35 percent that the pain increases as their bladder fills or decreases when the bladder is emptied. Other patients noted an association with other symptoms, including 31 percent who associated it with urgency and/or frequency, 23 percent who said they had worse pain during and/or after urination, and 17 percent who mentioned other urinary symptoms. Only eight percent noted only nonurinary symptoms or said that they “did not know.” To differentiate between IC and other chronic pain syndromes that IC patients may have, clinicians and researchers should ask about these features of the pain.
Genetics Makes Only Modest Contribution to IC Risk
Altman D, Lundholm C, Milsom I, Peeker R, Fall M, Iliadou AN, Pedersen NL. The Genetic and Environmental Contribution to the Occurrence of Bladder Pain Syndrome: An Empirical Approach in a Nationwide Population Sample. Eur Urol. 2010 Nov 4. [Epub ahead of print]
Analysis of a large twin registry indicates that, although there is a genetic component to IC, genetic factors contributed to less than a third of susceptibility, whereas environmental factors accounted for more than two-thirds. Early nongenetic factors within families were of little or no consequence.
IC Risk/Flare Factors Differ for Men, Women
Li GZ, Zhang N, Du P, Yang Y, Wu SL, Xiao YX, Jin R, Liu L, Shen H, Dai Y. Risk factors for interstitial cystitis/painful bladder syndrome in patients with lower urinary tract symptoms: a Chinese multi-center study. Chin Med J (Engl). 2010 Oct;123(20):2842-6.
“Stimulatory” foods, anorectal disease, and caffeinated drinks are risk factors for IC, according to an analysis of a survey of patients with lower urinary tract symptoms in China. Women with IC were more likely than those without IC to report they had had gynecologic infections, intake of “stimulatory” foods, and anorectal disease, whereas caffeine beverage intake was the only modifiable factor associated with IC in men. These foods and beverages are common flare producers, which this analysis may have identified, rather than identifying them as risk factors for developing IC. Urinary tract infections are also thought to be instigators in some women. The abstract does not define “anorectal disease.”
IC Does Get Better!
Warren JW, Greenberg P, Diggs C, Horne L, Langenberg P. A Prospective Early History of Incident Interstitial Cystitis/Painful Bladder Syndrome. J Urol. 2010 Oct 15. [Epub ahead of print]
Although IC may not go away, it does get better, shows this analysis from the Events Preceding IC (EPIC) study. The researchers recruited patients who were new patients, that is, those whose symptoms had started within the last 12 months. It’s now four years later for some of the patients, so the researchers had an opportunity to see how things progressed. They were able to check in with 304 patients every six months for two years and then at three and four years, asking about their symptoms that week and what medications they had used. As time went on, an increasing percentage of patients said they had improved, hitting 35 percent by the time of this analysis; 9 percent said their symptoms had gone into remission at least temporarily. Having symptoms disappear completely, however, was uncommon.
Descriptive Epidemilogy of Urologic Pain Symptoms in Men and Women
Brewer, J, Link, C, Eggers, P, Kusek, J, McKinlay, J. American Urological Association (AUA) 2010 Annual Meeting, May 29 – June 3, 2010, San Francisco, CA.
Could your IC be gone in five years? Data from the Boston Area Community Health (BACH) survey show that only about 10 to 15 percent of women and men who had symptoms suggesting IC or chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS) had the symptoms nearly five years later. That flies in the face of common wisdom that the conditions don’t go away and that they get worse with age. The survey sampled adults aged 30 to 79 years old and included 1,268 men and 2,139 women (with an equal number of black, Hispanic, and white people). In the first survey, 2.5 percent of women and 1.2% of men had symptoms of IC; 2.9 percent of men reported CP/CPPS symptoms. But when the people with symptoms were surveyed an average of 4.7 years later, about 88 percent of women and 84 percent of men did not have the symptoms anymore.
End Stage Bladder: Diagnosis and Treatment
Blaivas JB, Ghanaat,M, Weiss, JP, Liang, LM, American Urological Association (AUA) 2010 Annual Meeting, May 29 – June 3, 2010, San Francisco, CA.
Does IC progress to an inevitable bad end? These authors don’t think so. Only a few of their patients had IC so bad that it called for radical surgery. Those that did have these dire cases got to that terrible point fast, which is not typical of IC. The 25 patients (17 women, 8 men) tended to be older, with an average age of 65. The only young patient was a 20-year-old abuser of the street drug ketamine. The patients had severe symptoms and severely inflamed bladders, and most had hard, shrunken bladders with tiny capacities, which they call “end-stage” bladders. Typically, these patients’ IC progressed to this stage in 3 to 12 months. Most had radical bladder surgery and got better. Only one of the 12 patients who didn’t have surgery got better. Remarking on this presentation, Ken Peters, MD, from William Beaumont Hospital in Royal Oak, Michigan, said that this had been his experience, too. Patients who needed radical surgery were those with Hunner’s lesions whose cases progressed rapidly. In his experience, he said, the inflammation comes back in bladders that are enlarged surgically, so he removes the bladder.
Bowel Troubles Nearly Always Accompany Pelvic Floor Disorders
Raza-Khan F, Cunkelman J, Lowenstein L, Shott S, Kenton K. Prevalence of bowel symptoms in women with pelvic floor disorders. Int Urogynecol J Pelvic Floor Dysfunct. 2010 May 7. [Epub ahead of print]
Although only a tiny percentage of women going to a urogynecology clinic said bowel problems were their main trouble, nearly all of them had bowel symptoms—83 percent of the 463 women these urogynecologists saw over almost two years. The most common symptom was incomplete emptying at the end of a bowel movement (56 percent) followed by straining to have a bowel movement (55 percent), and flatulence (54 percent).
Twin with IC Shows More PTSD, Stress Symptoms
Wright LJ, Noonan C, Ahumada S, Rodríguez MA, Buchwald D, Afari N. Psychological distress in twins with urological symptoms. Gen Hosp Psychiatry. 2010 May-Jun;32(3):262-7. Epub 2010 Feb 20.
When one twin has IC symptoms, she shows more distress than her sister. Certainly, that’s no surprise as a consequence of having to cope with IC. This study analyzed responses to questionnaires about urologic symptoms of IC and psychological distress from 1,165 female twins (two-thirds of whom were identical twins). Although they did not detail how, the researchers said they adjusted for familial (a combination of genetic and environmental) factors between twins. After that, the twins with IC were more likely to have symptoms of post-traumatic stress disorder and higher levels of perceived stress. The authors did not clarify whether they thought these might be a trigger or a consequence of IC symptoms. The authors cited a 1998 nursing study, however, that found cognitive behavioral therapy and self care resulted in short-term improvements in symptoms. It is not known whether the unaffected twin might have IC symptoms develop later than her sister, which would affect these results.
Omega 3s May Prevent Endometriosis. Could They Also Ease IC?
Missmer SA, Chavarro JE, Malspeis S, Bertone-Johnson ER, Hornstein MD, Spiegelman D, Barbieri RL, Willett WC, Hankinson SE. A prospective study of dietary fat consumption and endometriosis risk. Hum Reprod. 2010 Mar 23. [Epub ahead of print]
The first-ever modifiable risk factor—that is, a risk factor you can do something about—has been found for endometriosis. Could there be a benefit for IC?
Analysis of the data goldmine for women’s health, the Nurses’ Health Study II, shows that women who at the highest quantities of long-chain omega 3 fatty acids, such as EPA and DHA common in fish oil, were 22 percent less likely to be diagnosed with endometriosis compared with those who ate the least. (And the diagnosis was certain—confirmed by laparoscopy.) In addition, those who consumed the most trans fats were 48 percent more likely to be diagnosed with endometriosis than those who at the least. Other studies have indicated that omega 3s might ease endometriosis symptoms. These findings support the efforts to get trans fats out of our food supply, said the authors.
One of the reasons this study is so intriguing for people with IC is that omega 3 supplements came up well in the 2009 ICA Complementary and Alternative Medicine Survey: 58 percent of you said fish oil or other omega 3 supplements help ease your IC symptoms at least somewhat. Since many IC patients also have endometriosis, and endometriosis causes pelvic pain, it could be that the respondents couldn’t peg the reduction in pelvic pain to one condition or the other. But another interesting possibility is that the omega 3s could also affect the IC disease process. Looking into the effects of omega 3s on IC might be a fruitful research topic.
IC Less Common in Korean than European Women?
Choe JH, Son H, Song YS, Kim JC, Lee JZ, Lee KS. Prevalence of painful bladder syndrome/interstitial cystitis-like symptoms in women: a population-based study in Korea. World J Urol. 2010 Mar 26. [Epub ahead of print]
Only one third of one percent of South Korean women met this study’s criteria for probable IC. The researchers used a cutoff of a score of 12 on the O’Leary-Sant Symptom and Problem Index to determine the rate of IC based on a telephone survey that included 2,300 women aged 18 to 71. The proportion of women who had total scores of 12 or more and scores of 2 or more for pain and nocturia was 0.35 percent. That estimate, said the authors, is lower than that in Europe and the United States and similar to estimates for Japan. Estimates of the prevalence of IC in the United States based on telephone surveys have increased with the use of expert-developed definitions. We won’t have a definite idea of how the rates compare across the world until similar studies are done or there is a definitive test.
Could the Pill Play a Role in Vulvodynia?
Goldstein A, Burrows L, Goldstein I. Can oral contraceptives cause vestibulodynia? J Sex Med. 2010 Jan 25. [Epub ahead of print]
Stopping birth control pills and using topical estradiol and testosterone resolved sexual pain for a woman described in this case report. The authors pointed to some studies showing that taking birth control pills with ethinyl estradiol (in nearly all birth control pills) increases the risk of vulvar vestibulitis (pain around the entrance to the vagina) or that taking lower-dose pills do. They speculated that this may have been why their patient had this type of vulvodynia develop. After three months of taking no oral birth control pills and using a cream with estradiol and testosterone around the vagina, she had no more pain with intercourse. This patient apparently did not have IC, and no mention was made of any cyclical change in her symptoms, which IC patients often report. If you are taking oral contraceptives to help control cyclic symptoms and you are concerned about the type of pill you are taking, talk to your gynecologist about the potential risks and benefits.
Allergy Shows Strong Link with Vulvodynia
Harlow BL, He W, Nguyen RH. Allergic reactions and risk of vulvodynia. Ann Epidemiol. 2009 Nov;19(11):771-7.
This is the first study we know of that makes a definite link between allergy and the risk of having an IC-related condition. Women with vulvodynia are at least twice as likely to have had allergies beforehand as women without vulvodynia. In the days when bladder biopsy was more common, pathologists often noticed mast cells in IC patients’ bladder tissue. Recently, researchers have also found mast cells in vulvodynia patients in the tissue at the entrance to the vagina. (Although not all IC patients show mast cells in their bladder tissue, a study of vulvodynia patients showed that they all had mast cells in tissue at the entrance to the vagina.) That suggested an allergy link to these researchers, who asked a group of 239 women with vulvodynia and 239 control women about their allergy histories. Women who had had hives were 2.5 times more likely to have vulvodynia develop later than the control women. Those who had a history of insect bites were 2.1 times more likely to get vulvodynia. And those who reported having seasonal allergies were 2 times more likely to have vulvodynia. Having environmentally induced allergic reactions may predispose women to developing vulvodynia or may be a marker of a ramped up immuno-inflammatory response system, speculated the investigators.
Tender Pelvic Muscles, Chronic Pelvic Pain Show Strong Link
de Souza Montenegro ML, Mateus-Vasconcelos EC, Silva JC, Nogueira AA, Dos Reis FJ, Poli Neto OB. Importance of Pelvic Muscle Tenderness Evaluation in Women with Chronic Pelvic Pain. Pain Med.. [Epub ahead of print]
More than half of women with chronic pelvic pain (CPP) have tender pelvic muscles, but only a tiny fraction of healthy women do. In this study, researchers who did not know anything about the medical history or status of the women they saw checked 48 healthy women and 108 women with CPP for pelvic muscle tenderness. They found muscle tenderness in 58.3% of the women with CPP but in only 4.2 percent of the healthy volunteers. The women with pelvic muscle tenderness had higher scores on a depression questionnaire, higher rates of pain with intercourse (63.5 percent versus 28.9 percent), and higher rates of constipation (46.0 percent versus 26.7 percent) than healthy women. These gynecologists said that checking for pelvic muscle tenderness may help identify women who need more intense treatment for CPP.
Epidemiology of Pelvic Floor Dysfunction Reviewed
Sung VW, Hampton BS. Epidemiology of pelvic floor dysfunction. Obstet Gynecol Clin North Am. 2009 Sep;36(3):421-43.
This article reviews the epidemiology of female pelvic floor disorders, including. urinary incontinence, pelvic organ prolapse, anal incontinence, and IC. Readers can learn about the disorders’ natural history, prevalence, incidence, remission, risk factors, and potential areas for prevention.
Poor Sleep Nearly Universal in IC
Tsai CF, Ouyang WC, Tsai SJ, Hong CJ, Lin TL. Risk factors for poor sleep quality among patients with interstitial cystitis in Taiwan. Neurourol Urodyn. 2009 Nov 6. [Epub ahead of print]
Poor sleep is common in IC patients, affecting 81 percent of patients in this study. Worse symptoms and depression were the most important factors in poor sleep. These researchers asked 69 patients (52 women and 17 men) who met the old, strict research definition of IC to complete questionnaires on IC symptoms (the O’Leary-Sant Symptom Index), the Pittsburgh Sleep Quality Index (PSQI), and the Hospital Anxiety and Depression Scale (HADS). Statistical analysis of the results showed that the severity of symptoms and levels of anxiety and depression were the most important factors in poor sleep. Specifically, nighttime urination was the symptom that was the biggest factor in poor sleep, even after statistical adjustment for age and other demographic factors and anxiety and depression.
IC Brings Psychosocial, Mental Challenges
Nickel JC, Tripp DA, Pontari M, Moldwin R, Mayer R, Carr LK, Doggweiler R, Yang CC, Mishra N, Nordling J. Psychosocial Phenotyping in Women With Interstitial Cystitis/Painful Bladder Syndrome: A Case-Control Study. J Urol. 2009 Nov 12. [Epub ahead of print]
With a battery of pain and psychologic tests, these researchers characterized the suffering, coping, and social challenges that women with IC face. The test results correlated with the degree of general pain. Stress anxiety, depression and “catastrophizing” correlated with symptoms specific to IC and decreased quality of life. The degree of pain was closely related to patients’ physical quality of life. Depression, “catastrophizing,” and stress were related to poor mental quality of life.
Rate of IC in Vulvodynia Patients May Be Very High
Kahn BS, Tatro C, Parsons CL, Willems JJ. Prevalence of Interstitial Cystitis in Vulvodynia Patients Detected by Bladder Potassium Sensitivity. J Sex Med. 2009 Oct 20. [Epub ahead of print]
Some 80 percent of vulvodynia patients may have IC. The estimate is based on results of the potassium sensitivity test and Pelvic Pain and Urgency/Frequency (PUF) questionnaire in 122 vulvodynia patients. Of those, 102 (84 percent) had positive results of the test and 97 (80 percent) had urologic symptoms. Although not all IC experts think this test is definitive for IC, other studies have indicated that the rate of vulvodynia is high in IC and vice versa. In fact, some speculate that vulvar pain may often be referred from the bladder, and it has been estimated that almost half of IC patients have vulvar pain. Although the prevalence needs to be confirmed with further study, the co-occurrence is high, so IC deserves more consideration as a possibility in patients who are getting vulvodynia diagnoses.
Age, Time to Diagnosis Make a Difference in Symptoms
Zámecník L, Hanus T, Pavlík I, Dundr P, Povýsil C. Statistical analysis of symptoms, endoscopy and urothelial morphology in 58 female bladder pain syndrome/interstitial cystitis patients. Urol Int. 2009;83(2):193-9. Epub 2009 Sep 10.
At a Czech hospital, the kind of treatment didn’t make a difference in outcomes for IC patients over the long term, but age and the time it took to get a diagnosis did. Urologists there followed up 58 patients for 6 to 7 years who had “histologically diagnosed” IC. Of those, 31 got oral medications and 27 got heparin instillations. Treatment, no matter which type, was helpful. But nothing about the patients seemed to correlate with how severe their symptoms were over the course of the disease except for older age and the amount of time they lived with IC before they got their diagnosis and treatment.
Symptoms, Outcomes Don’t Correlate with European Definition
Richter B, Hesse U, Hansen AB, Horn T, Mortensen SO, Nordling J. Bladder pain syndrome/interstitial cystitis in a Danish population: a study using the 2008 criteria of the European Society for the Study of Interstitial Cystitis. BJU Int. 2009 Sep 14. [Epub ahead of print]
Investigators tried to correlate the European Society for the Study of Interstitial Cystitis (ESSIC) definition of bladder pain syndrome/IC (BPS/IC) with symptoms, outcomes, and other characteristics; however , their evaluation was inconclusive based on this population of Danish patients. The analysts looked at the medical records of 359 patients with IC referred to the Department of Urology at Copenhagen University Hospital in Herlev from 1966 to 2008. All patients had pain, 75 percent had to get up at night to urinate at least twice, 42 percent had bladder capacities less than about two cups (under anesthesia), 53 percent had high numbers of mast cells in the bladder muscle, and 50 percent had fibrosis (similar to hardening or scarring) of the bladder. Patients who had a lot of mast cells in the bladder muscle, bladder fibrosis, and frequency at night had undergone more intense treatments. Bladder capacity and glomerulations (pinpoint bleeding) did not correlate with treatment intensity. Nevertheless, said the investigators, they could not draw any valid conclusions because of study limitations.
Cystoscopy, Biopsy May Help Characterize Disease
Wyndaele JJ, Van Dyck J, Toussaint N. Cystoscopy and bladder biopsies in patients with bladder pain syndrome carried out following ESSIC guidelines. Scand J Urol Nephrol. 2009 Aug 25:1-5. [Epub ahead of print]
Somewhat unlike the study of Danish patients, these Belgian urologists found that in patients with severe disease, although there was no relationship between how bad the bladder looked during cystoscopy and hydrodistention and the appearance of bladder tissue under the microscope, there was a relationship the cystoscopic appearance and inflammatory infiltration, numbers of mast cells in the bladder muscle, and swelling in the bladder stromal layer. The investigators performed the tests recommended in the European Society for the Study of Interstitial Cystitis/Painful Bladder Syndrome (ESSIC) guidelines for investigating and further typing of what they term bladder pain syndrome (BPS), including cystoscopy and hydrodistention and examination of bladder biopsy specimens. They did this for 50 patients whose scores on the O’Leary-Sant Symptom and Problem Index were high (more than 12) and who rated their pain at more than 7 out of 10. Despite some correlations, there were patients with severe symptoms who had normal-looking bladders cystoscopically and microscopically. Also, there was a strong relationship between bladder capacity and inflammation, mast cell counts, bladder bleeding, and the overall appearance of the bladder. These urologists concluded that to further “type” BPS, cystoscopy and hydrodistention and bladder biopsies may be mandatory. Whether the type correlates with the success of particular treatments remains to be researched.
IC Is Common in Teens, Young Women with Pelvic Pain
Rackow BW, Novi JM, Arya LA, Pfeifer SM. Interstitial cystitis is an etiology of chronic pelvic pain in young women. J Pediatr Adolesc Gynecol. 2009 Jun;22(3):181-5.
Forty percent or more of teen girls and young women with pelvic pain may have IC. That estimate comes from a small study, but because the criteria for IC may have been strict, the figure might even be low. These gynecologists looked at records of 28 girls and women ages 13 to 25 who came to the clinic, had chronic pelvic pain, and underwent both laparoscopy and cystoscopy with hydrodistention. They made a diagnosis of IC based on symptoms plus glomerulations seen during cystoscopy and hydrodistention. Among those women, 93 percent (26) had urinary symptoms, including frequency (75 percent), nighttime urination (32 percent), urgency (25 percent), and painful urination (18 percent). They considered 11 patients (39 percent) to have IC. Eighteen patients (64 percent) had endometriosis, and 7 (25 percent) of those had both IC and endometriosis. Twenty-three (82 percent) had painful periods, and 12 of 25 (48 percent) sexually active women had painful intercourse. The gynecologists said doctors should evaluate the bladder as a cause of pelvic pain when teenage girls and young women have chronic pelvic pain and urinary frequency or painful intercourse.
Prevalence of PBS in Japan Estimated at 0.265 Percent
Inoue Y, Mita K, Kakehashi M, Kato M, Usui T. Prevalence of painful bladder syndrome (PBS) symptoms in adult women in the general population in Japan. Neurourol Urodyn. 2009 Mar 3. [Epub ahead of print]
Through a web-based survey, these researchers gathered information about symptoms of painful bladder syndrome (PBS) from some 32,000 Japanese women 20 to 88 years old. Of these, 76.6 percent had negligible symptoms, 17.3 percent had mild symptoms, 5.6 had moderate symptoms, and 0.5 had severe symptoms. Based on that information, the possible prevalence was pegged at 0.265 percent. The authors noted this estimate is in line with the prevalence reported for adult women in Western countries.
PBS More Common in Older Women
Lifford KL, Curhan GC. Prevalence of Painful Bladder Syndrome in Older Women. Urology. 2008 Dec 30. [Epub ahead of print]
Unlike a previous analysis of the prevalence of IC/PBS from a very large population study, this analysis of a different study finds that the prevalence of PBS increases with age. In fact, it seems to rise progressively from 1.7 percent in women younger than age 65 to 4.0 percent in women aged 80 and older. This estimate is based on answers nurses gave to a question about bladder and pelvic pain in the Nurses Health Study, which included some 4,000 women who answered a supplemental questionnaire related to the question on the general questionnaire that some 67,000 women answered. This analysis also showed that, for most women, the symptoms were moderate to severe. Only 14.8 percent said symptoms were mild, but for 29.0 percent they were moderate, and for 56.2 percent, they were severe. A previous analysis of data from the National Health and Nutrition Examination Survey (NHANES) III concluded that the prevalence was actually higher in younger women age 25 to 44 than in peri- or postmenopausal women up to age 75. But the prevalence in that study, too, was high in the oldest women. That analysis was presented at the American Urological Association's annual meeting in 2005.
Other Conditions Common in IC -- and Travel Together
Warren JW, Howard FM, Cross RK, Good JL, Weissman MM, Wesselmann U, Langenberg P, Greenberg P, Clauw DJ. Antecedent Nonbladder Syndromes in Case-Control Study of Interstitial Cystitis/Painful Bladder Syndrome. Urology. 2008 Nov 7.
As part of the Epidemiology of IC (EPIC) Study, these researchers looked for other conditions IC patients might have before their IC diagnosis. They found 11 to be more common in IC patients than healthy controls: allergy, depression, migraine, irritable bowel syndrome (IBS), panic disorder, endometriosis, asthma, fibromyalgia/chronic widespread pain (FM-CWP), chronic fatigue syndrome (CFS), vulvodynia, and sicca (Sjögren's) syndrome. Since the rates of those syndromes in IC patients (except for vulvodynia) were similar to the rates already published in other studies of patients who have IC, these researchers think that, for many patients, these syndromes develop before IC, not after. Also, many more IC patients (78 percent) than controls (45 percent) had multiple syndromes, and certain syndromes often clustered together. The most common cluster was FM-CWP, CFS, sicca syndrome, and IBS. In addition, patients who had any of these were more likely to have some other syndrome, such as migraine, chronic pelvic pain, depression, or allergy. Very few patients had only pelvic syndromes before their IC came on.
The authors said they were surprised by that low prevalence of pelvic-only syndromes before IC. And, when this study was discussed at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) symposium last June, other researchers were surprised that these syndromes seemed to occur so often before IC. They pointed to data showing that patients who have had IC for a long time have more of these syndromes than those who haven't had IC long, implying that these problems develop later.
What does all that mean? The answers aren't clear, but the authors speculated that the associated syndromes, even the pelvic ones, aren't the result of the pelvic organs' "crosstalk" through nerves. The syndromes could be unrelated but simply share some genetic or environmental risk factors. Another possibility is that some of these syndromes are risk factors for IC. Still another possibility is that these syndromes and IC are different manifestations of the same disease. Although these findings don't prove the case, the authors said the data are consistent with the idea that these syndromes share some central nervous system abnormality that leads to heightened processing of pain and other sensory signals.
More Pain, Fewer Voiding Problems with Sex Abuse History
Seth A, Teichman JM. Differences in the Clinical Presentation of Interstitial Cystitis/Painful Bladder Syndrome in Patients With or Without Sexual Abuse History. J Urol. 2008 Sep 17. [Epub ahead of print]
Rather than trying to connect sexual abuse with IC, this study tried to determine whether IC is any different in patients who have a history of sexual abuse and those who don't. In general, patients who had been abused had more pain and fewer voiding problems. In the 119 women studied, 30 or 25 percent had a history of sexual abuse, which is about the national average. Those who had been abused didn't have to urinate as often and voided larger volumes of urine than those who had not. Abused patients also had more tenderness over the bladder in their genital area, and in their pelvic floor muscles, and scored worse on sexual function. There were no differences between the two groups of patients in terms of age, how long they had had their symptoms, the volume of their bladders on hydrodistention, and their scores on the Pelvic Pain and Urgency/Frequency (PUF) Patient Symptom Scale and the O'Leary-Sant Symptom and Problem Indexes.
Pelvic Pain Found to be Common in Australian Women
Pitts MK, Ferris JA, Smith AM, Shelley JM, Richters J. Prevalence and correlates of three types of pelvic pain in a nationally representative sample of Australian women. Med J Aust. 2008 Aug 4;189(3):138-43.
This survey of adult premenopausal Australian women showed that pelvic pain is common. Among the 1,983 women aged 15 to 49 who were still menstruating and sexually active, 72 percent had painful periods, 14 percent had pain with intercourse, and 22 percent had other kinds of chronic pelvic pain. Only 23 percent reported no pelvic pain of any kind. The study did not distinguish IC from other chronic pelvic pain conditions, which may indicate that IC is still not well known or well recognized in the general medical community in Australia. It may also imply that many physicians think of chronic pelvic pain only as gynecologic.
PBS Estimated at One Percent in China
Song Y, Zhang W, Xu B, Hao L, Song J. Prevalence and correlates of painful bladder syndrome symptoms in Fuzhou Chinese women. Neurourol Urodyn. 2008 Jul 31. [Epub ahead of print]
These gynecologists in Fuzhou, China, randomly surveyed 6,066 women aged 20 and older and were able to use information from 4,684 to estimate symptoms of painful bladder syndrome (PBS). Based on their answers on the Bristol Female Lower Urinary Tract Symptoms questionnaire, the investigators estimated that the prevalence of PBS was 0.98 percent, a rate that is similar to recent epidemiologic studies in the West. Having had more than two children, having diabetes, and smoking correlated with symptoms. Smoking was also correlated with PBS in a US study. Because China's one-child policy was instituted in 1979, women with more than two children are likely to be older.
Revised April 24, 2013