By Sarah Whitman
Senior Staff Writer
Linda Salin remembers lying on the bathroom floor, unable to sleep, overwhelmed with crippling pain and depression.
She had been diagnosed with Interstitial Cystitis, a painful and at times debilitating bladder condition associated with urinary frequency. An estimated 8 million women suffer from the disease.
“I didn’t want to live the way I was living,” Salin said. “I went to my doctor and said you have to do something about my pain or the next time you see me it’ll be in a cemetery. It was that bad.”
That was nearly 20 years ago. Today, the symptoms of Salin’s disease are under control, due in part to the Interstitial Cystitis Association, a nonprofit dedicated to finding new treatments for IC.
Salin, a Land O’ Lakes resident, is employed as a patient advocate and information specialist for the organization. She and 200 other ICA representatives will visit Capitol Hill March 25 to meet with congress members about research needed to find a cure for IC.
“We are going to urge them to continue funding,” Salin said. “People with IC can feel like they can’t go on another minute and they can’t get good medical care because doctors still don’t have enough knowledge about the disease.”
Interstitial Cystitis is defined as pelvic pain, pressure or discomfort related to the bladder and typically associated with urinary frequency and urgency in absence of infection. It causes thinning of the bladder, tightening of the pelvic wall and can cause ulcers in the pelvic region. Some IC patients use the bathroom up to 60 times a day, causing extreme strain on the pelvic muscles.
While the illness affects mostly women, men can also have the disease. Approximately 82,000 men are currently being treated for IC, but it is suspected many more have it. Urologists may misinterpret the symptoms as a prostate problem and not investigate further.
Salin said the disease is often misdiagnosed.
“It is treated as a urinary tract infection or doctors think that you are making it up,” Salin said. “A lot of doctors want to help but don’t know how. The ICA is trying to change that by making people more aware of the disease.”
According to the ICA, the best way to diagnose IC is with a cystoscopy under anesthesia, where the bladder is slowly stretched. The test can show bladder changes typical of IC, but sometimes the diagnosis is still missed.
There is no cure for IC but it can be treated in a variety of ways. Patients may take Elmiron, the only oral medicine specifically for the disease. Pain relievers, antihistamines and anti-depressants are also given to IC patients. Bladder distentions, bladder instillations and physical therapy are also used.
Physical therapist Shayne Tarrance specializes in helping women with pelvic pain at her Westchase office. She has treated Salin.
“Twenty-five percent of my practice is IC patients,” Tarrance said. “It can be extremely painful and cause urgency to where patients are going to the bathroom every few minutes. I work with them by going into the pelvic wall and using different techniques to relax the muscles. I also use behavioral modification to help patients retrain their bladder.
Salin currently uses a combination of pain medications, muscle relaxants and physical therapy. She also eats a diet low in acidic foods, which are known to worsen IC symptoms.
“You have to find the right treatments that work for you,” Salin said. “Physical therapy really helped turn things around for me. When I first started therapy, I couldn’t take a 20-minute car ride without having to rush to the bathroom. Physical therapy changed that.”
Salin said she became involved with the ICA to help keep others from suffering the way she did in the past. She was fortunate to have the support of her husband and children, but not everyone does. The ICA offers patient support and education so patients know they are not helpless.
Salin is looking forward to meeting with congresswoman Ginny Brown-Waite to discuss the possibilities for IC research. She plans to share her personal story and the potentially devastating life effects of IC.
“There was a point when I felt like giving up,“ Salin said. “The most important thing is to keep trying. I want people to know they can get help. There is hope.”
If you think your might have IC or for information on the disease visit www.ichelp.org.
