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How Does Interstitial Cystitis Begin

Dr. Lowell Parson’s Explores Early Signs and Symptoms of IC

11606One of the most recognizable figures in research and clinical care, Dr. Lowell Parsons has treated 9000 IC patients in his 35 year career at UC San Diego. A legend in the IC movement, he developed the only oral medication approved for treatment of IC, Elmiron, as well as a bladder instillation treatment now known as Hep-Lido-A. To assist physicians with the diagnosis of IC, he created both the potassium sensitivity test and the non-invasive PUF Questionnaire.  His research has focused on the structural integrity, or lack thereof, of the GAG layer of the bladder wall.

In one of his latest research studies, he sought to answer an important question “When and how does IC begin?” He surveyed 100 female IC patients from his clinic who, contrary to the perception that IC affects postmenopausal women,  reported that their symptoms began at very young ages.  21% reported that their symptoms began at age 10 or younger and another 11% percent had their symptoms begin between the ages of 11 and 17. 52% had symptoms begin at age 20 or less and a whopping 81% reported that their symptoms began at age 30 or less. Only 5% reported that their symptoms began after the age of 50.

52% had symptoms begin at age 20

The earliest symptoms were typically mild. He wrote “It is my observation that the first symptom is usually a slow insidiously progressive frequency.” And, in fact, 81% of participants reported frequency with 59% reporting urgency and 54% reporting pain. He continued “The patient does not present for help from a physician until it bothers them such as voiding every hour, multiple episodes of nocturia or has post void urgency.”

When these patients did seek medical care, 74% reported that their first diagnosis was UTI and were prescribed antibiotics despite the fact that they had negative urine cultures. Children were misdiagnosed with urethral problems, anxiety and/or a small bladder. Many women who had seen gynecologists for their pain were misdiagnosed with vulvodynia, endometriosis, yeast vaginitis or just chronic pelvic pain. If frequency/urgency worsened but pain did not occur, many patients were diagnosed with overactive bladder (OAB), a diagnosis that, he argues, is early or mild IC. He said “the scientific evidence supports the fact that both are one disease, epithelial dysfunction.” He proposes abandoning both IC and OAB in favor of “lower urinary dysfunctional epithelium (LUDE).” 

This study found that genetics plays a significant role as well with 51% of patients reporting that a mother or sister also has IC and 13% have a first degree male relative with similar bladder problems.

Dr. Parsons says that IC is not a difficult diagnosis to make. “It is an easy diagnosis when you realize the disease begins with urinary frequency and progresses slowly with intermittent flares of symptoms of urinary frequency/urgency and or pain.” Flares with intimacy are common and sex can be painful. He argues that if a urologist is seeing a 25 year old female for bladder symptoms, if she has painful intimacy, if her symptoms are influenced by her period and if she has a first degree relative with symptoms, “there is only one thing she could have, IC.” Only one test is needed, a UTI to rule out infection.

With respect to the progression of IC, he believes that it begins with mild symptoms of frequency/urgency that can slowly progress. Some patients may develop pain while others don’t. Flares are intermittent but that, with time and lack of treatment, can become longer. He always encourages prompt therapy that focuses on epithelial GAG layer replacement (Elmiron & Hep-Lido-A) that, he believes, can slow if not halt progression.

Do all IC patients have epithelial dysfunction?

In light of the recent trend towards phenotyping the IC patient, it’s crystal clear that there are clear, distinct variations in the IC patient population. I think that Christopher Payne MD nailed it last year when he proposed five key subtypes for IC. Epithelial dysfunction would fall under Subtype #2 (bladder wall dysfunction) and, as Dr. Parson’s suggests, early recognition and treatment is key. But I don’t think that every IC patient has bladder wall dysfunction.  Dr. Parsons noted in his discussion in his research that only 43% of the patients struggled with pain made worse with bladder filling and relieved by urination. 29% had pain during urination, with the remainder having pain after urination. In my experience, patients who have had pain not before but after urination, are often struggling with either bladder or pelvic floor spasms (subtype 3). I wonder if his survey assessed for PFD as well?

Ultimately, we’re faced with a chicken vs. egg scenario. Which comes first? In our case it’s the bladder wall vs. the pelvic floor. For some patients, IC symptoms began after a bladder wall injury (UTI, chemo therapy, etc.) and/or  dysfunction, the pain of which then causes the pelvic floor muscles to tighten. But for many others symptoms began after a pelvic floor trauma (having a baby, car accident, fall or rape) that damaged/tightened the pelvic floor, thereby reducing blood flow to the bladder leading to bladder wall dysfunction. Don’t forget that the single most effective therapy studied for IC was not a medication nor a bladder instillation, it was pelvic floor physical therapy.

Savvy patients will address both their pelvic floor muscles and bladder in their long term treatment plans.

References:

  1. Parsons CL. How does interstitial cystitis begin. Transl Androl Urol. 2015 Dec;4(6):605-10.
  2. Osborne, J. The New Paradigm For Treating IC. IC Optimist. Summer/Fall 2015. 5-9
  3. Fitzgerald MP, et al. Randomized multicenter clinical trial of myofascial physical therapy in women with interstitial cystitis/painful bladder syndrome and pelvic floor tenderness. J Urol. 2012 Jun;187(6):2113-8.

Watch A Video Series of Dr. Parson’s Lecture on IC

Part One

Part Two

Part Three

By | 2017-01-31T08:37:03+00:00 April 13th, 2016|Front Page Feed, Interstitial Cystitis Network Blog|Comments Off on How Does Interstitial Cystitis Begin

About the Author:

My Google Profile+ Jill Heidi Osborne is the president and founder of the Interstitial Cystitis Network, a health education company dedicated to interstitial cystitis, bladder pain syndrome and other pelvic pain disorders. As the editor and lead author of the ICN and the IC Optimist magazine, Jill is proud of the academic recognition that her website has achieved. The University of London rated the ICN as the top IC website for accuracy, credibility, readability and quality. (Int Urogynecol J - April 2013). Harvard Medical School rated both Medscape and the ICN as the top two websites dedicated to IC. (Urology - Sept 11). Jill currently serves on the Congressionally Directed Medical Research Panel (US Army) where she collaborates with researchers to evaluate new IC research studies for possible funding. Jill has conducted and/or collaborates on a variety of IC research studies on new therapeutics, pain care, sexuality, the use of medical marijuana, menopause and the cost of treatments, shining a light on issues that influence patient quality of life. An IC support group leader and national spokesperson for the past 20 years, she has represented the IC community on radio, TV shows, at medical conferences. She has written hundreds of articles on IC and its related conditions. With a Bachelors Degree in Pharmacology and a Masters in Psychology, Jill was named Presidential Management Intern (aka Fellowship) while in graduate school. (She was unable to earn her PhD due to the onset of her IC.) She spends the majority of her time providing WELLNESS COACHING for patients in need and developing new, internet based educational and support tools for IC patients, including the “Living with IC” video series currently on YouTube and the ICN Food List smartphone app! Jill was diagnosed with IC at the age of 32 but first showed symptoms at the age of 12.