Painful, disabling interstitial cystitis often goes undiagnosed

Carolyn Schatz

Former Editor, Harvard Women's Health Watch

Millions of Americans—most of them women—suffer from a bladder condition known as interstitial cystitis. According to a new study of this disorder, fewer than 10% of women with symptoms of interstitial cystitis are actually diagnosed with the disorder, even though it severely affects their lives. Without a proper diagnosis, women with interstitial cystitis are missing out on treatments that might bring them some relief.

As I describe in an article in the August 2011 issue of the Harvard Women’s Health Watch, interstitial cystitis is a chronic bladder condition that causes recurring bouts of pain and pressure in the bladder and pelvic area. Individuals with the condition usually have an urgent and frequent need to urinate—sometimes as often as 60 times a day. The pain and discomfort can be so excruciating that only about half of people with interstitial cystitis work full-time.

Researchers with the federally funded RAND Interstitial Cystitis Epidemiology (RICE) study surveyed nearly 150,000 households in the United States between 2007 and 2009. Based on data gathered during follow-up interviews, the RICE researchers estimated that 3% to 7% of American women have bladder symptoms that could be interstitial cystitis. (The researchers focused on women because women develop interstitial cystitis about eight times more than men do.) That translates into three to eight million women possibly affected—far more than health experts thought.

Most of the women with symptoms of interstitial cystitis who were interviewed had seen one or more clinicians, and almost half had gotten a diagnosis of some kind. But only 9.7% were diagnosed with interstitial cystitis. The findings were published in the August 2011 Journal of Urology.

Just this spring, the American Urological Association published the first-ever clinical guidelines for diagnosing and treating interstitial cystitis. There’s little consensus on the best ways to treat this condition. But several approaches, alone or in combination, have been shown to help. These include:

  • psychosocial support
  • behavior changes, such as avoiding foods or activities that cause flare-ups
  • medications, such as tricyclic antidepressants (which relax the bladder) and Elmiron (the only medication specifically approved by the FDA for treating interstitial cystitis)
  • specialized physical therapy

You can read the entire Harvard Women’s Heart Watch article on interstitial cystitis here.

Related Information: Better Bladder and Bowel Control


  1. Benjamin

    This is helpful, You’re an excessively professional blogger. I have joined up with your feed and also be up for on the lookout for more of your great article. Also, I’ve shared your web blog in my social networking sites!

  2. Heather Smith

    Informative post, thanks for sharing were to seek help when you this illness and also for the tips not to have it.


    Interstitial Cystitis will discovered after +- 4 years of research and lots of (2x) urologists you will be diagnosed (too late). It would be great when urologists will specialize themselves more into IC and work together more. The research must take in one day instead of several days. For an IC patient traveling aint the best solution. So this is my advice and hope I see you on the biggest Interstitial Cystitis community IC-Today

  4. Jeff Johnson

    I have already been visiting your site for 3 days. absolutely love your posts. by

    the way i’m conducting a research concerning this topic. do you happen to know

    other good sites or perhaps online forums where I might get more information?
    I think youve made some truly interesting points. Not too many people would

    actually think about this the way you just did. Im really impressed that theres so

    much about this subject thats been uncovered and you did it so well, with so much

    class. Good one you, man! Really great stuff here

    • Carolyn Schatz

      Hi Jeff,
      The main patient information and advocacy Web sites for interstitial cystitis are the Interstitial Cystitis Association (800-435-7422, and the Interstitial Cystitis Network (707-538-9442, They make a point of being up-to-date on research and new approaches to treatment for this difficult condition. They’re a good place to start.

  5. zey

    whether the disease can be cured?
    [URL removed by moderator]

    • Carolyn Schatz

      Hi zey,
      No, there’s no cure so far. But there are several approaches (including medications, diet, relaxation techniques, and so forth) that many women with interstitial cystitis have found helpful. We describe these approaches in the article in Harvard Women’s Health Watch that we mention and link to, above, in the blog.

  6. newport

    Nice post..

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