Interstitial Cystitis Network
Support and information about Interstitial Cystitis, Bladder and Pelvic Pain, Pelvic Floor Dysfunction and Hunner's lesions
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Latest posts
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How to Support Someone With a Chronic Illness Like IC/BPS
When you were first diagnosed with IC/BPS, support may have shown up fast. Friends texted, family asked questions and someone maybe even dropped off a meal. Then the weeks turned into months. Your condition didn't go away, but the check-ins slowly did, often because people don't…
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How IC/BPS Symptoms Change Over Time
A few days or weeks after an IC/BPS diagnosis, the question usually comes: does interstitial cystitis symptoms get worse over time? Lying in bed at 2 a.m. after our second bathroom trip of the night or curling around a heating pad to try and find relief, we can't help but wonder…
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Why Social Media Isn’t As Safe For Health (and IC) Education As It Should Be
As the founder of the very first website built on IC, as well as the very first forum (the ICN Support Forum), I have strong thoughts on the state of IC support online today. In the earliest days, we viewed the internet as a marvelous way of bringing the world's best resources…
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Why You Deserve Better Than One Size Fits All Recommendations
Interstitial cystitis / bladder pain syndrome (IC/BPS) is one of the more confusing diagnoses in urology — not because doctors don't understand pain, but because "IC" isn't really one disease. It's an umbrella term for a set of symptoms (pelvic pain, urgency, frequency) that can…
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New French IC/BPS Guidelines Recognize & Expand Upon Phenotyping
While we don’t hear much from France with respect to research, their new IC/BPS guidelines add yet more confirmation on the role of phenotypes and how they can be used to create an individualized treatment plan. They take a slightly different approach to the ESSIC and AUA…
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Patients Call for an FDA Review of Elmiron®
SANTA ROSA, Calif. - September 1, 2026. Patient advocates are calling on the U.S. Food and Drug Administration to formally reevaluate Elmiron® (pentosan polysulfate sodium, or PPS), or at minimum adopt stronger prescribing and monitoring requirements, citing a growing body of…
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What Proactive Care with IC/BPS Actually Looks Like
A particular kind of quiet can settle in on the drive home from a urology appointment. You went in with a list. You came out with a photocopied diet sheet, a suggestion to try to keep your stress down and a follow-up in six months. Somewhere in there, someone used the phrase…
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The Curious Link Between Bladder Inflammation and Depression
Why, oh why, do some IC patients struggle with depression?? Certainly lack of consistent sleep could be a cause along with intense, persistent pain. Having a doctor tell you that you have an incurable disease (an outdated and incorrect conclusion) is certainly upsetting. But…
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Pulsed Electromagnetic Therapy (PEMF) Gaining Traction in IC Clinics
Earlier this year, an IC patient contacted the ICN to rave about a new therapy she was receiving. Known as SofPulse, this FDA approved device delivers gentle pulses of electromagnetic therapy into various parts of the body, where it helps activate the body’s natural…
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How to Get the Answers You Need—and The Care You Deserve
Making the Most of Your Doctor's Appointment If you've lived with IC/BPS for any length of time, you've probably left more than a few doctor's appointments frustrated and wondering if your doctor truly understood—or even cared—about what you were going through. Some doctors…