The Treatment and Mistreatment of Chronic “Urgency and Frequency”
By Christine Cupaiuolo — June 9, 2009
In 1970, Kay Zakariasen sought treatment for a bladder infection. The resulting diagnosis (a too narrow urethra) and treatment (surgical dilation) set her on a course of pain and frustration for the next three decades.
In an article published at the National Women’s Health Network and at Our Bodies Ourselves, Zakariasen describes what it was like living with the constellation of bladder and pelvic pain symptoms that is often referred to as interstitial cystitis. And she laments the lack of effective, evidence-based treatments:
Studies touting the effectiveness of surgeries such as hydrodistention and instillations often fail to follow basic practices of good scientific research. Almost no published reports on IC are randomized, controlled clinical studies in which both researchers and patients were “blinded” about the subjects’ conditions and the treatment being tested to ensure objectivity. Most studies also failed to include control groups, which compare a group getting the treatment being investigated with a control group receiving only a placebo. When higher quality scientific studies have been done, they often fail to support the initial positive results. As a result, experts suggest that the reported high success rates for IC treatments should be reduced by 35% to factor in the placebo effect, and by as much as 50% to address spontaneous remission of the patient’s symptoms. It’s likely that many women, if informed about these low success rates, would decide not to have invasive treatments.
Zakariasen found some relief for severe intestinal bloating — which many IC patients have, and which started for her about the same time as urological treatment with antibiotics and dilation — when a holistic internist treated her for food sensitivities and intestinal candida. But she did not get significant help for chronic bladder urgency and frequency until years later, when she was treated for “intestinal bacterial overgrowth.”
The experiences left Zackariasen frustrated by the dearth of evidence-based information about surgical outcomes and alternative treatments.
In 2003, with the help of Dr. Elizabeth Kavaler, a urologist, Zakariasen created a patient survey — www.cystitispatientsurvey.com — for women who had been treated for IC. Most of the respondents said surgeries either worsened or had no effect on their symptoms. More than 1,300 patients have completed the survey, and four physicians who analyzed some of the data published an article in the January 2008 issue of the journal Urology. Our Bodies Ourselves and the National Women’s Health Network contributed letters of support to the survey.
The survey is still open for women to share their experiences, and Zakariesen is seeking volunteer statisticians to help analyze more data.
Zakariasen is currently writing a book on her experiences and the history of treatments for interstitial cystitis. She asks readers who are willing to share their medical experiences to contact her at email@example.com.
In the article posted at OBOS, Zakariasen makes the case for more patient involvement in the treatment of IC, but her statement applies to all aspects of women’s health:
Despite the principle that patients should be the primary decision-makers regarding their own treatment and care, it is clear that many women are not given all of the information they need to make a truly informed decision. Patients have a right to know — for every treatment a doctor offers — the nature of the procedure, the quality of evidence supporting it, its benefits and risks, and any alternatives to that treatment.
It took years and multiple physicians to figure out my excruciating bladder pain. One doctor even told me that, at age 24, “nothing serious happens to people your age, therefore this is nothing serious.” All without an exam or testing.
I was diagnosed tentatively with IC, but was told it was possible ( a 1% chance) I had a mycoplasma infection that would not grow in normal culture medium. There were only a couple labs in the country to send it to. Turns out, that’s what I had. Doxycycline reduced my symptoms by 50%, and we tested again for sensitivity, and I was lucky enough to have a resistant strain. A month of azithromycin later, I am mostly symptom free. I so wish it didn’t take 3 years to figure this out.
Dear Mrs. Spock,
Thank you for posting a blog about my article on IC in the NWHN newsletter. Your story is very interesting. I am now interviewing patients and would like to talk to you if you are willing, to hear the whole story – multiple physicians, pain, how you were tested, etc. Your story may be helpful to others when we get the book I’m working on published.
thank you very much,
Hello Kay! I am very happy to see you a still doing wonderful work. I have been trying to figure out how to get back in touch with you. Here is my email address: firstname.lastname@example.org. I would love to here from you.