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Life, in pain: Part 6 — Interstitial cystitis

Chronic pain has long baffled doctors and often left patients feeling helpless. But a mind-body approach is helping Chicago women reclaim their lives.
Jenni Prokopy
Contributing writer

In this six-part series, Jenni Prokopy of joins Well Community in examining the six most common chronic pain conditions affecting women — chronic fatigue syndrome, endometriosis, fibromyalgia, vulvodynia, TMJ dysfunction and interstitial cystitis.

To read the introduction to the series and a personal perspective from the series author, click here.

Four years: That’s how long it typically takes for a patient to be diagnosed with interstitial cystitis (IC). That’s because the symptoms of the condition — which affects eight million people in the U.S. (nearly all of them women) — are commonly confused with those of urinary tract infections and other conditions.

As with many chronic pain conditions, lack of a definitive diagnosis can be frustrating for both patient and doctor.

“I think a lot of physicians want one answer and it’s nothing like that — there’s nothing like that in medicine, really,” says Dr. Kristin Dziadosz-Jones, an ob/gyne at Swedish Covenant Hospital.  

Likewise, Dziadosz-Jones says it’s also common for patients to want a simple solution: “A lot of patients say, ‘I want to take one pill and have it be over with,’ but it’s a happy medium of different therapies and different things that can get you to symptomatic relief. It may not be a cure but it’s just the symptomatic relief that really matters.”

Many physicians agree that when working with IC patients — as with nearly any chronic pain patient — the key to achieving pain relief is to address all areas of the patient’s life.

“We treat the mind, the body and the soul,” says Dr. Ronnie Mandal, an internal medicine physician at Swedish Covenant Hospital. “It makes sense; everything is connected. There should be more of a multidisciplinary approach.”

Mandal stresses the importance of creating unique treatment programs for each patient.

“In my experience with these diseases, there’s no real one way to do it,” he says. “You have to tailor-fit what works for people, like with a lot of conditions.”

This approach fits with the all-encompassing technique that’s called for in the treatment of IC — as with many chronic pain conditions — by recommendation of the Institutes of Medicine (IOM), which released a report in July 2011 examining the prevalence of chronic pain in the U.S. While one single treatment approach may not bring a patient relief, often the methodology of approaching the symptoms from all angles brings more positive results.

Relief comes from numerous treatment options

Treating IC necessitates a variety of approaches. Hydrodistention (also referred to as “bladder instillations”) is typically tried first: The bladder is filled with liquid and medications to help relieve pain. However, this treatment alone is not highly successful, says Dr. Shameem Abbasy, a urogynecologist at Swedish Covenant Hospital. While the process anesthetizes the nerves for a time, those nerves do eventually grow back, she says.

That’s why adding other treatment approaches is so important. Dietary modifications that reduce intake of irritating foods and beverages can help. Bladder “training” can also provide some relief; in this process, a patient drinks a large amount of fluid, then stays near a toilet, waiting to relieve herself until the pain and urgency is extreme. When the training works, it helps stretch the capacity of the bladder to some degree, and to reduce the frequency of urges to urinate.

Help beyond the doctor’s office

Abbasy often refers her IC patients for physical therapy. She says some pain comes from the tendency for patients to tense up their pelvic floor muscles, which is part of a “guarding” response common among many people with chronic pain: Without being fully aware of what they’re doing, a patient may tense up the area surrounding her most painful spots.

“You know, if you thought somebody was going to hit you, you would tense up, right?” explains Abbasy. “Or if you had a long-standing bladder infection, your body’s reaction might be to contract your pelvic floor.”

Heather Baker, a physical therapist at Swedish Covenant Hospital who specializes in pelvic floor therapy, helps by manually releasing tension or muscle spasms and teaching patients what a relaxed pelvic floor feels like.

“I’ll teach them what the relaxed state is, and then I might have them do hourly pelvic floor dropouts, or hourly relaxation, just to retrain their body into resting at the relaxed state, as opposed to resting in that tightened, clenched, irritable state,” Baker explains.

By teaching patients how to relax, she empowers them to have some control over their pain.

Research: What’s on the horizon for interstitial cystitis?

Eight million people in the U.S. have IC, yet research grant funding from the National Institutes of Health in 2010 was only $13 million — that’s $1.63 per person, according to a 2011 report by the Chronic Pain Research Alliance (CPRA).

Dziadosz-Jones says it’s time for research to examine how chronic pain conditions like IC are connected to other similar conditions: “I think investigating a link between chronic pelvic pain and other chronic conditions, such as chronic fatigue syndrome, IBS, fibromyalgia or interstitial cystitis … could improve treatment programs significantly.”

Fortunately, there is some research currently being conducted that may help researchers better pinpoint IC and tailor treatment to individual patients. The ICA keeps a log of the most up-to-date research. The NIH site offers a more comprehensive approach.

Rita’s story: Life with interstitial cystitis

Four years ago, Rita, a 48-year-old Chicagoan living in Jefferson Park, started feeling bladder urgency and frequent urges to go the bathroom. She felt burning in her bladder and urethra, and pressure in her bladder and stomach area. Despite numerous treatments, those symptoms haven’t gone away.

Rita started treatment with her general practitioner, but quickly moved to working with a urologist; a cystoscopy (an exam using a small camera inserted through the urethra) showed she had no tumors or other issues, and the doctor prescribed a skin patch to control bladder urgency. But finding no relief, in 2008 Rita switched providers again, this time to a urogynecologist, who diagnosed her with interstitial cystitis (IC).

Since then, Rita has had numerous treatments, including frequent bladder instillations — a procedure that fills the bladder with solutions that contain medications to help calm symptoms — and pelvic floor physical therapy.

Despite the numerous treatment approaches she has tried, today Rita is so symptomatic she is unable to work.

“I can’t sit for more than 20 minutes without any pain or irritation,” she says.

She has days where she has to run to the bathroom every 15 minutes, and her sleep is frequently disrupted.

“It’s very maddening; you go every hour, you don’t get any sleep,” she says. “I’m exhausted all the time now. It starts to kick your butt.”

Even so, she does feel that switching to a urogynecologist has given her some relief, and hopes that eventually, she will improve.

“I’m a very upbeat and positive person, even through all of this,” says Rita. “I always look at things as the glass is half full. Like the old saying goes, you laugh to keep from crying.”

Editor’s Note: The patients we interviewed for this series asked that we protect their privacy by not sharing their names. We felt it was important to share these testimonials to help shed light on the day-to-day impact these conditions have on local women.

5 tips on searching for chronic illness support groups

  1. Look for a group that contains a mix of people from different backgrounds, including some who are near your age; this will help you gather different perspectives and find people you can relate to.
  2. Ask your health care providers if they know of any reputable groups in your area; their recommendations are often trustworthy.
  3. Check with local hospitals to see if they host support groups near you.
  4. Be prepared to use support groups as a supplement to the other support you may receive from friends, family and your health care team — not as your only source of support and encouragement.
  5. If you join a group and realize it’s not really a good fit (it’s too far to drive, or too many people are negative), quit it! Your time is precious. You’ll be able to find another.

Support group resources

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