Wendy Farrell went eight years without a diagnosis of interstitial cystitis, a condition which is still not very well-known. IC Awareness Month is celebrated in September, which raises awareness for people like Farrell.
Wendy Farrell said her eight years without a diagnosis of interstitial cystitis demonstrates the importance of IC Awareness Month, which is celebrated in September.
The cause of IC is not known, according to the National Library of Medicine’s PubMed Health website. The site states IC is “a painful condition due to inflammation of the tissues of the bladder wall ... The condition generally occurs around age 30 to 40, although it has been reported in younger people. Women are 10 times more likely to have IC than men.”
Symptoms of IC include pain during intercourse, pelvic pain, urinary discomfort, urinary frequency, and urinary urgency, according to PubMed Health.
Farrell, who now works at CVPH Medical Center, said before she was diagnosed with IC, she was living in “constant pain.” She added IC held her back in work, saying there were times when she had to go to the bathroom every 15 to 20 minutes.
“I can tell you in Plattsburgh pretty much where every bathroom is because I had to know that,” Farrell said.
In fact, Farrell has two brothers who she didn’t visit for approximately four years because they lived in New Hampshire. Being in the car for the amount of time required to get there was not an option, she said.
Diagnosing IC is difficult because it’s made through a process of elimination, eliminating the possibility of bladder cancer and sexually transmitted disease.
“It’s not like a blood test that you can take and say, ‘Oh, you have IC,’” Farrell said.
Often the condition is falsely diagnosed as a urinary tract infection.
“Patients often go years without a correct diagnosis,” according to PubMed Health. “On average, there is about a four-year delay between the time the first symptoms occur and the diagnosis is made.”
Farrell was diagnosed about two years ago by a doctor in Burlington, Vt.
“It was such a weight off my shoulders to know — not that I wanted to be sick, but to know what was causing it,” Farrell said.
During the following year, she was taking up to 20 pills a day to try to ease the symptoms of IC. Farrell said the pills left her “very groggy and disoriented,” so she was often forced to choose between going to work in pain, or staying home without suffering.
The pain for her was particularly triggered by stress. Thankfully, about a year ago, she began work at CVPH, at a job she said was much less stressful than her previous one.
Her level of stress dropped so much that she no longer needs to take medication. That said, she still does have occasional flare-ups of IC symptoms. She still can’t eat spicy and acidic foods, or drink caffeine.
“Most days are pretty good,” Farrell said. “Occasionally, you’ll have days that are quite painful.”
Farrell said there needs to be a greater awareness about IC among doctors and the public.
“I think it’s important to help other people out there so they don’t think that it’s all in their head,” Farrell said, of sufferers. “You get to a point where you feel crazy, because no doctors can figure out what’s wrong.”
Farrell said those who wanted support or information regarding IC should call her at 593-9230.