An extremely painful and potentially debilitating disease that most have never heard of is affecting more than a million Americans.

Kim Waitz spends most of her days at home in pain. The 43-year-old used to have a career, ran her daughter to soccer practice and was what she called a normal working mother.

Waitz said she was misdiagnosed by doctors for 20 years. She has a condition called Interstitial Cystitis, also known as “IC” or Painful Bladder Syndrome.

“It’s debilitating,” Waitz said. “There are days that I can’t get out of bed. There are days I can’t leave the house. I’ve actually had 16 abdominal surgeries – including a hysterectomy.”

IC is a condition in which the lining of the bladder breaks down and holes, ulcers, lesions or hemorrhages form on the bladder lining.

Waitz goes to Dr. Denise Pecht’s office in Lawrenceville for treatment. Pecht treats more than 300 women with IC.

“They say the typical IC patient sees five physicians over a five-year period before the diagnosis,” Pecht said.

A late diagnosis can be dangerous, because the longer left untreated the more excruciating the pain becomes. That’s common because many patients find their condition uncomfortable or embarrassing to talk about. Plus, symptoms are often mistaken for other conditions.

“They hide it,” Pecht said. “Patients overcompensate for having to go to the bathroom 20 to 30 times a day.”

Research shows 90 percent of patients diagnosed are women.

Waitz has an extreme case. She now has to have bladder treatments each week just to manage her disease.

“It's changed most everything about my life,” Waitz said. “You have to change your diet. You have to change the way you do things.”

Waitz said her hope is that IC will become a more common diagnosis so that other women don’t suffer the way she has for more than two decades.

“If you feel like something just isn't right with your body, just don't stop, keep pushing,” Waitz said. “I should have asked more questions. I should have pushed harder. Maybe they would have found it earlier.”

If caught early, IC can be managed through diet. Doctors and researchers have not been able to determine why some people suffer from IC and others don’t.