I am gutted to share with you that IC research funding has, for the most part, been cut from the National Institutes of Health’s budget. The NIH has conducted critical research in IC and pelvic pain that has changed our lives for the better. We are now adrift. It is vital that we, the patient community, support IC research. Your voice matters.  I’d like to show you how NIH has changed the lives of millions of IC/BPS patients for the better. 

Prior to 1987, no large scale studies on IC/BPS had been done in the USA nor was there any consensus about its epidemiology, the terminology to be used, diagnostics, treatments and pathophysiology. 

In 1987, the NIH’s National Institute of Diabetes, Digestive and Kidney Diseases (NIDDK) was the first to create a definition for IC that could be used to identify patients for research studies. It required the finding of Hunner’s lesions or glomerulations, as well as urinary symptoms, for patients to be considered for any research study. 

From 1991 to 1996, the NIDDK allocated millions of dollars to perform the first “cohort study” which was designed to follow a group of IC patients over a period of time to learn about their health. In this study, we learned that the quality of life of many IC patients was worse than those in end stage renal failure. IC was much more severe than many realized. 

In 1997, they validated the first research surveys that could be reliably used to track IC symptoms over time. Having a way to accurately measure symptoms was vital to future research. 

From 1998-2003, the first Clinical Trials group (ICCRN) was launched to determine if some treatments would help. These studies were performed in selected research centers across the USA and at one center in Canada. Trial #1 tested pentosan polysulfate compared to the use of hydroxyzine. It failed. Trial #2 tested intravesical BCG as a treatment which showed no success. This wasn’t an administrative failure. It showed, very importantly, that these treatments were ineffective. 

In 2003, the second ICCRN group was formed to test two more therapies over a five year period. Trial #1 tested oral amitryptiline vs. placebo which showed negative results except in some patients who were at higher doses. Today, we can see why this would be helpful. Amitriptyline helps to calm nerves systemically, aka the widespread pain phenotype. 

In Trial #2, they had hoped to test cyclosporine but the manufacturer would not provide medication for the study. They chose, instead, mycophenolate mofetil (aka CellCept). This study was terminated early because because patients given placebo were doing better than the patients given the medication. 

In 2005, the Urinary Tract Pain and Pelvic Floor Research Network (UPPCRN) was formed to study the role of the pelvic floor in bladder and pelvic pain. They conducted the most successful IC study funded by the NIH, testing the effectiveness of myofascial pelvic floor physical therapy vs a placebo of general massage. This changed the course of IC care in the United States by validating the role of muscles in triggering urinary symptoms and pelvic pain. Patients with pelvic floor dysfunction are receiving physical therapy today because of the data developed in this study. 

In 2008, the NIH launched the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network, a collaborative and multidisciplinary research effort designed to better understand the underlying pathophysiology and patient “phenotypes” (i.e., observable biological and clinical characteristics) for IC/BPS in women and men and Chronic Prostatitis/Chronic Pelvic Pain Syndrome (CP/CPPS) in men. 

This stunningly successful research network has conducted vital IC research for the past sixteen years, with too many breakthroughs to list here. 

MAPP 1 (July 2008 – 2014) conducted a 12 month cohort study for a year. They followed 424 patients and 415 controls (no symptoms) and 200 controls with other pain conditions. Patients received surveys twice a month, had bladder and neurological examinations, as well as urine studies. 

MAPP 2 (July 2014 – June 2023) conducted a 36 month cohort study to identify symptom patterns. They followed 620 participants who answered questions every 3 months and received deep phenotyping at baseline, six, 18 and 36 months 

These studies resulted in extensive clinical data of patients over time, with both urologic and non urologic conditions and physical examinations. They gained information about neuroimaging, biospecimens (urine, semen), pain testing and animal models of IC/BPS. They wanted to learn what approaches worked better. They also identified phenotypes, tried to predict symptoms over time as well as response to various treatments. 

MAPP Findings 

MAPP data initially identified two clear phenotypes: pain predominant and urinary predominant. When you followed them over time, they responded differently. For some, pain worsened while for others urinary symptoms worsened. Yet MAPP data also showed that some patients do improve over time, contrary to the myth that patients don’t get better. 

MAPP studies also showed that patients with widespread pain did better with systemic therapies while those with pain just in their bladder and/or pelvis did better with local bladder treatments and/or physical therapy. 

MAPP created a system that helps doctors evaluate for pelvic floor tenderness. Using the clock model, if patients only had pain in one area of the pelvic floor, this was low. If they had pain in 2 to 5 sites, this was moderate. If they had pain in six sites, that was high or severe PFD. 

A staggering 68% of men and 87% of women had moderate to high tenderness in their pelvic floor. Interestingly, 21% of men and 28% of women had high tenderness as well as widespread pain and neuropathic pain. This system helps identify the patients who would respond the best to muscle treatment. 

MAPP conducted extensive neuroimaging (i.e. functional MRI) to try to understand how our central nervous system was involved in pain. They found that widespread pain patients showed abnormal patterns in the area of analgesics. Increased functional connectivity showed better success. This created the foundation for the use of transcranial stimulation as a treatment for widespread pain, currently being studied by Dr. Jason Kutch at USC. 

MAPP had state of the art researchers looking for an elusive bacteria that could be the cause of IC. They found no bacteria but they did find that IC patients had more fungus in our urine than controls, probably related to the use of antibiotics. 

To date, the MAPP Research Network has published 133 publications, vital papers that help us understand why IC/BPS is so complex and difficult to treat. I encourage you to view them yourselves at: https:// www. mappnetwork.org/publications/ 

Conclusion 

The National Institutes of Health is actively working to find the cure for cancer, a plight that has affected almost every family in this country. Their work with hundreds of diseases such as Parkinsons, Alzheimers and diabetes is invaluable. Their research led to the development of vaccines for hepatitis, meningitis, RSB, HIV and anthrax. They helped to develop statins for heart disease. They helped to develop the first artificial heart valves. They have led the Human Genome Project to help us understand the role of genes in various diseases. They have conducted vital research into pain and depression. 

It is, in my opinion, unconscionable to cut their funding. Yes, more rigorous overview always makes sense but to systematically dismantle research teams is shocking. Today, top USA researchers are being courted by universities in Europe and many have chosen to leave for a safer and more secure research environment where they are not vilified for being scientists. In a recent study of 1600 scientists, 1200 reported that they were leaving the country.2,3 

Here’s the truth. Without the millions of dollars that were allocated by the NIDDK for IC study, we would be living in the dark ages, likely treating IC with bladder therapies that have little chance of success with clinicians discounting our pain and suggesting that it was all in our heads. The NIH validated our struggles. It helped define IC as a legitimate medical condition that should be studied and it identified treatments that could ease the suffering of millions of patients around the world. 

Health research funding should not be withheld or politicized. Our lives and the lives of our descendants will depend upon it. We need more funding for health research, not less. 

I encourage you to call and write your congressional representatives and senators to support vital NIH research. Show up and meet with your representatives and ask hard questions like “how will they support more health research” especially into IC and pelvic pain. And, of course, vote for candidates that support science and health research. 

Scientists are not the enemy. We are the foundation for future advances. 

References 

1. Mole B. $15 billion in NIH funding frozen, then thawed Tuesday in ongoing power war. Ars Technica. July 30, 2025.

2. Berman M E. The predicted—and predictable—brain drain is here BMJ 2025; 389 :r1335 doi:10.1136/bmj.r1335 

3. Siegel E. American science to soon face its largest brain drain in history. Big Think. July 2, 2025.