ICN Survey Center – Participate in an IC Survey Today
The ICN Survey Center provides real time data collection and analysis for researchers, graduate students and companies throughout the world who are conducting studies related to interstitial cystitis, pain management, complementary therapies, quality of life, sexual dysfunction, and pelvic floor dysfunction. We’re proud that data generated from our site has been presented at major medical conferences including the NIDDK Basic Bladder Science Symposium, ACOG, ISSWSH, AUA and others. Without you, the patient, this data would not be available! We thank you for helping us to gather this vital information!
Title: Did your IC Begin After A Traumatic Event?
(November 2015) Zoe can tell you exactly what triggered her IC, a devastating car accident. She was rear ended by a fully loaded semi truck. Though she had pelvic pain immediately after the accident from the seat belt, her major injury was first thought to be a broke clavicle. Unfortunately, a few days later she was admitted to the hospital with ischemic colitis (occurs when blood supply is restricted and tissue starts to die). A short time later she experienced the first of many “bladder infections” before interstitial cystitis was finally diagnosed. Though she may never know, one logical assumption is that blood supply to her bladder may have also been restricted resulting in a breakdown of her bladder wall.
Given what we now know about the subtypes of IC, the role of a traumatic event in the onset of pelvic pain makes sense. Childbirth, pelvic surgery, bicycle (and motorcycle) riding can put pressure and/or injure the pelvic floor muscles. Chemotherapy, ketamine use and simple bladder infections provide direct insult to the bladder wall. Patients with functional somatic syndrome struggle a hypersensitive nervous system where even mild trauma can trigger severe discomfort. Most IC patients have reported that short term, intense stress can trigger an IC and/or IBS flare. Long term stress can have far ranging consequences, including chronic pelvic floor muscle tension, the development of painful trigger points, high blood pressure, heart disease, diabetes, depression, anxiety and a compromised immune system. We’ve just launched a new survey to ask our newest members about the role of trauma and the onset of their IC symptoms. We hope that you will share your experience. How did your IC begin? Can you trace it to any specific events?
Title: HSV & IC Flares
(July 2015) An ICN member recently reported that every time she has as genital herpes outbreak (Herpes Simplex 2), her IC flares. We’re curious? Does anyone else experience this? This survey is entirely anonymous and we will collect no identifying information (i.e. name). It’s a quick exploration into a potential cause of IC flares and what symptoms it might provoke.
Title: Elmiron and IC: Cost, Side Effects & Effectiveness
(January 2015) The only oral medication FDA approved for interstitial cystitis in the USA, Elmiron (aka pentosan polysulfate), has received mixed results in research studies. But, for the patient community, the dominant issue is the cost as prices have increased steadily in the last few years. We’re interested in hearing from you, the IC patient, about your experience with Elmiron.
- Did you experience side effects?
- Did you have to stop the medication due to side effects or cost?
- Has your insurance dropped their coverage for Elmiron?
- How much are you paying out of pocket for it?
Title: Menopause and IC: Does “The Change” Affect IC?
(January 2015) For some women, it’s a breeze and barely noticeable. For others, perimenopause and menopause is a time of crazy mood swings, hot flashes and, to our great frustration, new episodes of leakage. Whether you’re going through the change naturally, chemically or through a total hysterectomy, the loss of estrogen can have a profound affect on bladder function, sexuality and pelvic floor health in normal women, much less women with interstitial cystitis.
We’d like to learn more about how menopause affects the average woman with IC. Have your urinary symptoms worsened? Got more frequency? Urgency? Pressure or Pain? Have you noticed irritation in the urethra? Struggling with incontinence and a weakening pelvic floor? That’s also a possible result of aging. If you’re a woman going through menopause and/or are perimenopausal, please help us understand just how this can impact IC. Please take the survey here!
Title: How Much Does Interstim Cost: The Short & Long Term Costs of Therapy
(Spring 2014) When patients are advised to do a medical procedure and/or a surgical procedure such as Interstim, getting a clear idea of the cost is challenging. The reality is that patients struggling with severe IC are often desperate and willing to try just about anything. But, do you really know the cost that that procedure might incur?
One patient was shocked to receive a bill for $66,000 for the device even after she was assured that it would be covered by insurance by her doctors office, the hospital and her health insurance company. Had she known, she would never have agreed to have the surgery because she simply can’t afford it.
This got us thinking. Has anyone really attempted to collect the actual costs incurred for Interstim® therapy in the USA, both short and long term? We thought we’d try because new IC patients need to know the potential costs of a treatment that could require multiple surgeries.
We’ve created a survey that asks Interstim® patients to share their experiences and costs. We’re interested in learning about:
- the costs of a trial implant
- the costs of undergoing a permanent implant
- the costs of reprogramming
- the costs of device removal
Was it covered by your insurance? How much did you pay out of pocket? Was it more than you expected? Were you told that it was covered only to discover, after the fact, that it was not?
We would also be interested in seeing actual bills (with your name and identifying information removed) so that we can provide examples to patients so that they have an accurate understanding of what they are getting in to financially. YOu can remove all identifying information from bills before you share them with us.
No personal information will be shared nor do you need to give us exact figures. We’re just looking for your best estimates. At the end of the survey, we will ask for your state so that we can look at any regional trends.
This is the biggest survey we’ve done but by participating, you could really help another IC patient understand the financial risks. Take The Survey Here!
(Spring 2014) While IC is commonly known to be associated with irritable bowel syndrome (diarrhea, constipation or both), visit any IC support group and you’ll also find patients struggling with a variety of stomach complaints, including:
- gastroparesis (delayed stomach emptying)
- stomach ulcers
This informal study seeks to determine if IC patients struggle with more stomach complaints than previous reported in other studies, as well as to determine if stomach complaints were present before, or developed after, the onset of bladder symptoms. Click here to take survey
Title: Antibiotic Use, Infections and IC
(Fall 2013) Despite the lack of positive urine cultures, many patients routinely take antibiotics to treat their IC and bladder symptoms. This survey asks patients about their antibiotic use, frequency of bladder infections and if they believe that antibiotics help resolve their symptoms. Click here to take survey
Title: Medical Marijuana and IC
(07/10) Medical marijuana is a difficult, politically sensitive subject. While research studies have shown that medical marijuana can be effective in reducing neuropathic pain and/or muscle tension disorders, it is still illegal for use in many states. Our goal is to collect some data that can help determine if medical marijuana is helpful or hurtful in the management of pelvic pain and IC symptoms. Your answers are entirely anonymous. We will not ask for any identifying information from you. We simply want to know what your experience is. We hope that the preliminary data gathered in this survey may be used to support a larger funded study into the use of medical marijuana for IC or pelvic pain symptoms. Click here to take survey
Research & Survey Services
Are you conducting research??
Looking for the opportunity to gather data from a large population of IC patients??
We offer a variety of research services, including:
Patient Recruitment: To assist with patient recruitment, we can publicize your research studies and/or clinical trials on our website or in blast e-mails. We have done this for several research centers, including the University of Maryland.
Web Based Surveys: Since our founding in 1995, we havehosted, conducted & managed a wide variety of web based surveys. Our on-line survey system provides real-time data analysis available for you and your staff 24/7 or your raw data can be sent directly to you for analysis. Downloadable and exportable in multiple formats.
For additional information, please contact ICN President Jill Osborne