Lisa A. Goldstein
Barb Zarnikow woke up one day feeling like she had the worst bladder infection of her life. Her extreme pain felt like acid was being poured into her bladder or that her bladder was being cut up by broken glass. She had a constant need to urinate. In fact, the urge was so strong it was painful. At times, the pain was so bad that she just wanted to stay in bed with a heating pad on her abdomen.
Repeated urinalyses never showed any signs of infection, but antibiotics were often prescribed, which seemed to help only a little.
“At the worst point during this journey, I couldn’t make a 20 minute drive to work without stopping along the way to use the bathroom,” recalls Zarnikow. “I was going to the bathroom at least 40 times a day/night.”
Unfortunately, in struggling to get a proper diagnosis, Zarnikow experienced these symptoms for five years – until she was finally diagnosed with interstitial cystitis in 2000.
What is interstitial cystitis (IC)?
The Interstitial Cystitis Association describes IC as a bladder condition that usually consists of multiple symptoms. Most patients have recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, along with urinary frequency and urgency.
Other names for IC include painful bladder syndrome, bladder pain syndrome, and chronic pelvic pain.
IC symptoms can be different for everyone. Some believe that there may be additional subtypes of IC: non-ulcerative and ulcerative. The ICA says that 90 percent of IC patients have the former. Patients who have the latter usually have Hunner’s ulcers, or patches, which are red, bleeding areas on the bladder wall.
According to the ICA, three to eight million women in the U.S. may have IC, which accounts for three to six percent of all women in the U.S. Women used to be ten times as likely as men to have IC, but now they’re only five times as likely. The reason for this difference isn’t known, says Dr. Robert Evans, MD, associate professor of urology at Wake Forest University and a well-known IC researcher and medical educator. He says it’s possible that the actual difference is even less as many male patients with IC symptoms are diagnosed with chronic prostatitis when they actually have IC.
There is a slight genetic component to IC, with a familial incidence of 10 percent, says Dr. Kristene Whitmore, MD, founder and director of the Pelvic and Sexual Health Institute of Philadelphia. The likely conclusion – and one researchers have found – is that IC doesn’t discriminate. Anyone of any age or race can develop it.
What causes IC?
The exact cause is unknown. Researchers have identified factors that may contribute to the development of IC, however. The ICA says that many researchers believe a trigger (caused by one or more events) may initially damage the bladder or bladder lining, ultimately leading to the development of IC. Some of these triggers may include:
• Bladder trauma (such as from pelvic surgery)
• Bladder overdistention (such as onset after long periods without access to a bathroom)
• Pelvic floor muscle dysfunction
• Autoimmune disorder
• Bacterial infection
• Hypersensitivity or inflammation of pelvic nerves
• Spinal cord trauma
As Dr. Evans explains, “It is felt by many investigators that the root problem is an abnormal lining to the bladder known as the glycosaminoglycan or GAG layer. This mucus layer in the bladder protects us against the naturally occurring acid in our own urine and for reasons that are unclear, it can break down, leading to the passage of acid and potassium across the defective barrier layer. When the acid leaks across, it causes a release of histamine from inflammatory cells, which triggers a response in nerve fibers. When they fire, it causes severe pain.”
It used to take up to seven years to be diagnosed with IC, but now it can be less than two years, says Dr. Whitmore. The average age at diagnosis is about 40 years old. Dr. Evans says he has children as young as eight as well as elderly patients diagnosed well beyond retirement age. Most of his new cases are women in their 20s or 30s.
There’s no definitive test to identify IC. Zarnikow hadn’t even heard of IC until she read about it in a magazine and realized that her symptoms matched the ones described. She found the ICA website and educated herself about the condition. She also spoke to a patient advocate. At this point, Zarnikow had been going from doctor to doctor to get a diagnosis. She actually told doctors that she suspected she had IC. One doctor told her there was no such thing as IC. Another did a bladder biopsy and told her she didn’t have it because she didn’t have Hunner’s lesions; he said she simply had a chronic inflammation of the bladder lining.
“Unfortunately, at that time, many doctors believed that the absence of Hunner’s lesions ruled out IC,” Zarnikow says. “The diagnosis of chronic inflammation of the bladder lining is IC – with or without lesions. By the time I was properly diagnosed, I had developed Hunner’s lesions!” Her diagnosis finally came when she met with an urogynecologist, a doctor specializing in female urologic and gynecologic issues.
There is no cure for IC, but there are treatment options. Nothing works for everyone, however. Dr. Whitmore says that treatment is multimodal; all pelvic conditions must be treated. She lists some treatments: low acid diet, bladder analgesics, physical therapy, Botox, sacral nerve stimulation, home exercise programs, fiber and water, counseling, and medications. Dr. Evans adds biofeedback and stress management to the list.
Another treatment that has been found to help is bladder instillation, which involves filling the bladder with a medicated solution that includes the drug dimethyl sulfide (Rimso-50), also called DMSO. In this procedure, a narrow catheter is guided through the urethra to fill the bladder with the medicine, which is held inside for about 15 minutes before it’s drained. This can be repeated weekly for a period of 4-8 weeks. DMSO can pass into the bladder wall and has been shown to reduce pain and inflammation.
Medication hasn’t worked for Zarnikow. She’s tried natural supplements, but hasn’t found anything that’s really helped. Bladder installations have been helpful, acupuncture has helped some, and pelvic floor physical therapy has helped tremendously. She also does yoga, is careful about her diet, and tries to avoid trigger foods. Resting when she doesn’t feel well is crucial.
There are several exciting treatment options on the horizon, says Dr. Evans. One is Liris, a device that can be placed in the bladder where it releases lidocaine continuously. It’s been shown to decrease pain and has also eliminated ulcers. There’s also a new oral agent called AQX-1125 that shows a significant decrease in pain; it’ll be studied again this year in a larger trial. There may be new clinical trials for Tenazumab, a medication that will help prevent nerve growth.
Living with IC
Zarnikow says that IC affects every aspect of her life. Even simple tasks can seem daunting on bad days. Any time she goes anywhere, she worries about being able to find something that she can eat, or if there will be a bathroom. It’s depressing and causes anxiety.
The good news is once you learn your triggers and ways to manage symptoms, living with IC is easier. Zarnikow finally decided that she wasn’t going to let IC rule her life. She lets people around her know that she has it and how it affects her, so they understand her behavior. She tries to find humor in situations that arise.
“I think that often people, women especially, need to give themselves permission to spend the day in bed if they’re feeling bad, and that’s ok,” says Zarnikow. “But you also need to tell yourself that you won’t use IC as an excuse to get out of doing things you don’t want to do.”
Zarnikow says that knowledge is power. She recommends educating yourself upon diagnosis and keeping track of food and treatments, and being willing to try until you find a doctor or something that helps. Support is extremely helpful.
IC is an invisible illness, “because most of us who have it don’t look sick,” Zarnikow says. It’s a real condition. “We don’t just have small bladders and wearing Depends won’t solve the problem,” she adds. “The pain IC causes sometimes feels unbearable and people with IC need understanding from those around them.”