“It’s like living in a world of constant surprise. You never know how your day will go. Some days you wake up feeling okay, other days you are in so much pain you can’t move,” said Valerie Goldberg, 28. Goldberg was diagnosed with Interstitial Cystitis three years but has suffered from its effects her entire life.
In the state of New York alone, 256,451 – 779,612 people, mostly women, suffer from this condition. And according to findings in the RAND IC Epidemiology Study, an estimated total of 2.7 to 6.5 percent of women in the United States bear its burden. It’s called Interstitial Cystitis (IC), but you likely have never heard of it. It’s a chronic bladder condition that mimics the symptoms of a Urinary Tract Infection (UTI)—burning with urination, urinary frequency and pelvic or flank pain. However, despite the millions suffering nationally, this prominent condition flies lowly under the radar of the running dialogue on women’s health.
The main reason for its obscurity is that it’s difficult to diagnose. According to the Interstitial Cystitis Association, “because interstitial cystitis (IC) symptoms are similar to those of other disorder of the bladder and there is no definitive testy to identify IC, doctors must rule out other treatable conditions before considering a diagnosis of IC.” The exclusion path to diagnosis is necessary because patients with IC will not test positive for bacterial growths in a urine culture or urinalysis. The only visible symptom of the condition is inflammation of the bladder, which can be detected by a cytoscopy—a procedure used to look inside the bladder via an optic instrument. Unfortunately, bladder inflammation is still a sign of other conditions. Ruling out all “other treatable conditions” means, in some case, that despite symptoms of dyspareunia, pain, frequency, and urgency, patients will often go years without a correct diagnosis.
It took Goldberg months to find hers. “The diagnosis process was a horrible nightmare. I woke one morning when I was 24, a couple of months away from turning 25, with 10-level pain. I could barely walk or sit. I went to ERs, gynos and uros. No one could help me. They tested me for all STDs, cysts and cancer, which all came back negative. I was even made fun of by several doctors and nurses that the pain was in my head. Finally after complaining and crying in someone’s office I got put on a 3-month waiting list to see a specialized doctor in Philly,” said Goldberg.
Jenny, an IC sufferer who wished to remain anonymous, has suffered from the condition since she was eleven-years-old. She didn’t get diagnosed until she was 27. “I’ve learned that doctors don’t know everything,” said Jenny. “I read about bladder treatments online that my urologists had never heard of, even though they were being routinely practiced around the country. I also learned that doctors can have biases. One urologist was adamant about installing a sacral spine stimulator to help with my symptoms, and then later I found out she was receiving money from the company to teach classes about the technique.”
A week ago, I officially became a part of New York’s IC statistics. This diagnosis was the result of anxious waiting and nerve wrecking suppositions from doctors. At various points in the four months I spent frequenting specialists’ offices, I was told that I “probably” had a sexually transmitted infection, ovarian cysts, endometriosis, kidney stones, parasites and, most commonly, a UTI. All tests were negative. The fact that I had just returned from Africa complicated the possibilities, but the frustration I felt hop-scotching between doctors with no answers, having to insist on the presence of symptoms, is the plight of many. The Interstitial Cystitis Network Support Forum has 51,870 members, and a plethora of their threads and posts detail their longwinded experiences finding a diagnosis or a treatment.
The treatment, however, is not conclusive. “There is no magical pill,” said Dr. Hillel Marans, a urologist in New York City. “The condition is chronic.” Dr. Marans suggested dietary changes as the first order of action for new patients. Caffeinated, spicy and acidic foods and beverages irritate the bladder, so they should be limited. If the condition worsens, however, he recommends RIMSO-50. The medication is instilled directly into the bladder by a catheter or syringe, usually while the patient is under anesthesia. This procedure, according to Dr. Marans, has produced good results with past patients but is only necessary if the pain or frequency becomes unbearable.
Dr. David Cherry, an acupuncturist in Sacramento, strongly warns against the procedure, however, because of its “toxic effects”. According to Dr. Cherry, many women do not react well to the instillation, and the effects can often be obsolete.
Jenny, who underwent these bladder instillations, agrees. “The bladder instillations I was administered that were meant to treat the IC were the most trying times since I’ve been diagnosed with IC. I had around 20 rounds of different cocktails at several different urologists’ offices and was even ordered to do them at home daily. Every time I was catheterized, I would have incredible urethral pain that would last days to weeks. I later discovered that the catheters would inflame an already irritated nerve, and that I should avoid it all costs. But I lost months curled up in a ball with a heating pad and ice pack, hoping that the next one wouldn’t be so bad.”
Cherry does, however, recommend alternative treatments. While dietary modification is the first step, acupuncture is also an effective method of healing and pain reduction for suffering patients.
Dr. Jane Yiu, a practicing acupuncturist in New York City agrees. On the Interstitial Cystitis Network, she is cited recommending “at least 10 acupuncture sessions before giving up.” Along with acupuncture, many patients have also found relief through sauna use, or over-the-counter, acid-control pills, like Prelief. Holistic approaches appeal to many who have found no relief in western medicine, but more fine-tuned, western guidelines are arising from reputable organizations.
Goldberg is looking into acupuncture or Percutaneous Tibial Nerve Stimulation (PTNS), a “cutting edge treatment” that uses electric signals to stimulate the bladder, but such treatments are costly. She currently uses prescription pain medications, painkillers, antidepressants and anti-anxiety medication, as well as heat and ice packs to sooth flare-ups.
The Interstitial Cystitis Association recommends a six-step procession of treatment guidelines, starting with dietary changes and physical therapy and ending with, as a last case scenario, surgery. Because of the chronic nature of the condition, if the patient is not in too much pain or discomfort, the first two lines of treatments are enough to help without creating further complications. “It’s not worth the risk,” said Dr. Marans.
Interstitial Cystitis can be a confusing condition, but awareness of its existence is the first step for patients who are experiencing its symptoms. Little is still known about its cause, though past bladder infections and sexual history are current theories, and its diagnosis remains vague. After four months of waiting, I finally received mine, and a visit to the doctor today re-shifted all suspicions back to parasites. Fortunately, for 4 – 12 million IC sufferers and me, clinical research is improving medical understanding of the condition daily.
“I have learned how strong I am,” said Goldberg. “At my worst point when I was undiagnosed, I never thought there would come a day where I could have some freedom again. While I do still suffer with pain and frequency, I am more educated now and have more treatment and am able to help others. I have good days and bad days, which is much better than having all bad days.”
IC Update: I am currently seeing an acupuncturist in Chinatown, Dr. Mou Chuan Jing, O.M.D. He has prescribed an herbal remedy in addition to a 5-series of acupuncture treatments. I have completed three of the five treatments and am feeling some relief. (Dr. Mou – 7-8 Chatham Sq. Suite 805, 10:00a.m. – 7:00p.m. Telephone: 212-349-1768)
(Originally posted on City Shape)