העמותה לקידום המודעות לתסמונות ומחלות שלפוחית השתן DMSO מוחדר לעתים כקוקטייל בשילוב עם תרופות אחרות.
17/04/2026
עברו עלינו חודש וחצי של מתח מלחמה אזעקות ושהייה במיקלטים וממדים בהחלט תקופה לחוצה לשלפוחית השתן...מאחורי הקלעים אני בקשר מתמיד עם מנהלות עמותות שלפוחית כאובה באירופה ארהב ועוד..ויש לנו קואליצייה בינלאומית שניפגשת לדיונים בזום ..לפני שבוע הוצאנו באופן משותף קול קורא: בהזדמנות זאת מעדכנת ששבוע שעבר התקיים זום של קואליציית עמותות שלפוחית כאובה(ic) קואליצייה בינלאומית שהקמנו לאחר מיפגשים שלנו בכנסים בחו"ל בהם השתתפתי (בניו יורק.אמסטרדם בודפשט) בהם החלטנו יחדלהוציא קול קורא לקהילה הרפואית הבינלאומית לרופאים מובילי דיעה .ולהלן מצרפת את הקול קורא באנגלית שיוגש למספר ארגונים רפואיים ביניהם ארגון הבריאות הבינלאומי.הקול קורא יופנה לקהילה הרפואית וכולל מומחים מובילים בתחום.מצורף הקול קורא המקורי באנגלית:Summary
Patients are calling for decisive action: global research coordination, standardized definitions, mandatory phenotyping, root-cause investigation, full patient inclusion in scientific processes, training of new specialists, the right treatment for the right patient, better treatment access, and recognition of the disease’s psychosocial and economic burden. Incremental change has failed. The time for coordinated, courageous global reform is now.
For decades, individuals living with interstitial cystitis/ bladder pain syndrome (IC/BPS) have waited for scientific breakthroughs improve diagnosis, treatment, and long-term outcomes. However, despite a substantial increase in research output, including more than 700 publications between 2010 and 2025, patients continue to face the same reality: unknown causes, limited and often ineffective treatments, prolonged diagnostic delays, and lifelong pain and a major impact on their quality of life.
This call for action is based on a comprehensive review of two decades of scientific literature conducted by patient advocates. While the volume of research has grown, its impact has not. Studies frequently rely on small sample sizes, inconsistent methodologies, and heterogeneous patient populations grouped under an overly broad and poorly defined diagnostic label. The absence of internationally standardized definitions and coordinated international collaboration has hindered cumulative scientific progress. As a result, study findings remain inconclusive, with authors inevitably reporting that “more research is needed.”
IC/BPS remains underfunded and marginalized within urology, partly because it is non-oncological, predominantly affects women, and does not align with procedure-driven models of care. Few specialists are trained to treat it, and expertise is declining as senior clinicians retire. Meanwhile, conceptual confusion and, particularly the expansion of diagnostic frameworks that conflate bladder-specific pathology with other pelvic or systemic pain syndromes, has weakened research clarity and patient care.
In the following sections, we provide a more detailed explanation of the urgent call for action from the international patient advocates.
Preamble: Decades of research with insufficient progress
For decades, people with interstitial cystitis/bladder pain syndrome (IC/BPS) have waited for scientific advances that could truly improve their lives. Despite a considerable increase in scientific publications, their daily lives remain unchanged: no clearly identified cause(s), very limited treatments with little proven effectiveness, lengthy delays in achieving a diagnosis, and a lifetime of pain and disability, with a major impact on their quality of life.
This call for action is based on a rigorous, multi-year analysis of the scientific literature conducted by patient advocates engaged in continuous medical-scientific monitoring. Between 2010 and 2025 alone, more than 700 scientific publications on IC/BPS were identified, with publication rates accelerating to nearly 100 articles per year since 2021. These studies span reviews, clinical trials, randomized controlled trials, meta-analyses, and multicenter studies. And yet, again and again, they arrive at the same conclusion: results are inconclusive, sample sizes are too small, methodologies are weak or inconsistent, and “more research is needed.”
This lack of cumulative scientific effect is not accidental. It is the predictable outcome of fragmented, siloed research efforts conducted without sufficient coordination, standardization, or integration of prior findings. Studies are repeated across continents without meaningful coordination with parallel work elsewhere. Terminology and definitions vary, inclusion criteria are inconsistent, and heterogeneous patient populations are grouped under a single umbrella diagnosis that lacks clarity. The result is stagnation and profound discouragement for patients.
The human, social, and economic cost of this failure is enormous. IC/BPS is a painful, disabling disease. Many patients are unable to work due to pain and extreme urinary frequency. Diagnostic odysseys last years. Social lives collapse around the need for constant access to toilets. Patients are isolated, dismissed, and too often told their suffering is psychological. This is unacceptable.
A Disease Neglected by the Medical System
IC/BPS is recognized in many countries as a rare disease, yet it continues to receive minimal funding, limited clinical attention, and inadequate representation within urology. The reasons are well known: IC/BPS is complex, non-oncological, predominantly affects women, and does not lend itself easily to surgical intervention. In a specialty increasingly dominated by oncology and male-focused conditions, IC/BPS patients have been sidelined.
The consequences are severe. Few urologists specialize in IC/BPS. Many refuse to treat these patients. Existing experts are approaching retirement, with no adequately trained next generation to replace them. Waiting lists grow longer. Patients are forced to travel long distances, often while in severe pain and with frequent urgent need to urinate, if they can access care at all.
At the same time, medical education has deprioritized IC/BPS. In many medical schools, it is barely taught. Research funding committees view it as vague, poorly defined, and therefore unworthy of investment. This creates a vicious cycle: a lack of clarity discourages funding, a lack of funding discourages research, and a lack of research perpetuates uncertainty.
The Cost of Conceptual Confusion
One of the most damaging developments in the past two decades has been the progressive dilution of IC/BPS as a defined bladder disease. Expanding terminology and overly broad diagnostic frameworks have led to patients with fundamentally different underlying conditions being grouped together in studies. Pelvic floor disorders, referred pain syndromes, central sensitisation, and bladder-specific pathology are often analyzed as though they were one and the same.
This lack of clarity has undermined research, discouraged industry investment, and alienated clinicians. It has also harmed patients, many of whom receive incorrect diagnoses and inappropriate treatments. A disorder can only be called interstitial cystitis if it is located in the bladder. Precision matters, scientifically, ethically and economically.
What Patients Are Urging
We, an international coalition of IC/BPS patient advocacy organizations representing millions of patients worldwide, issue this call for action because incremental change has failed. Polite requests have not worked. Waiting has not worked. We now demand action.
We call for:
A coordinated global research initiative on IC/BPS, bringing together urologists, immunologists, neurologists, pain specialists, rheumatologists, and other relevant disciplines. IC/BPS cannot be solved within urology alone.
Internationally standardized terminology, definitions and study protocols, developed through genuine international consensus, to ensure that research is comparable, cumulative, and meaningful.
Mandatory phenotyping in research studies, recognizing that IC/BPS is not a single disease entity but potentially a spectrum of conditions with potentially distinct underlying mechanisms.
A renewed focus on identifying root causes, not merely managing symptoms. Without understanding causation, cure will remain impossible.
Obtaining the right treatment, meaning a personalized treatment as recommended by IC/BPS experts or based on proven research, preferably within a multidisciplinary team and with a multimodal approach until the root causes are clear.
Meaningful inclusion of patient organizations at every level, including scientific conferences, guideline development, consensus meetings, and research design. Patients are experts in their disease. Excluding them is both unethical and counterproductive.
Investment in training the next generation of IC/BPS specialists, ensuring that expertise is not lost and that patients are not abandoned.
Improved access to treatment, including reimbursement for effective therapies, development of new treatment options, and serious consideration of the risks and limitations of currently approved medications.
Recognition of the full burden of IC/BPS, including its impact on mental health, employment, sexuality, and family life, with appropriate psychosocial support integrated into care.
An Invitation to Collaboration and Action
We are at a breaking point. Patients are exhausted. Advocacy organizations are stretched thin. Desperate individuals are turning to unproven and potentially harmful treatments because the medical system has failed them. This is not a future any of us should accept.
This declaration is an invitation. We recognize and deeply respect the clinicians and researchers who have chosen to work in this difficult field. We know IC/BPS patients are challenging, and the lack of effective tools is emotionally draining for professionals as well. That is precisely why we must work together differently, more boldly, and more honestly.
IC/BPS patients deserve answers. They deserve progress. They deserve a future in which no one is told, after years of suffering, that “more research is needed” while nothing fundamentally changes.
The time for fragmented efforts is over. The time for coordinated global action is now.
Names and Organizations
