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Interstitial Cystitis changes life for unbearable pain

Date:2018-12-05 click:0

 Interstitial Cystitis (IC) is a rare chronic disease of the bladder characterized by frequent urination, painful urination or pain/pressure in the bladder or pelvic area that does not go away. Sufferers make up an estimated 2 percent of the population. The quality of life of an IC patient has been compared to that of someone on kidney dialysis or someone suffering from chronic cancer pain.

Because of the chronic pain, 40 percent of IC patients are unable to work, 27 percent are unable to have sex, 27 percent have had a marriage breakdown, 55 percent have contemplated suicide and 12 percent have attempted suicide, according to Wikipedia.
Because some of the symptoms resemble those of urinary tract infection and other maladies, it is often misdiagnosed.
Poskochil was diagnosed in 2000 after several years of symptoms and about a year of looking for help. Several physicians she tried were not familiar with IC. It was only when she saw a urologist that she received the correct diagnosis.
She was soon put on an experimental medication, which turned out not to be effective.
“IC has changed my life,” she said. “I believe there’s a reason for this. It’s taught me to appreciate life and to have a better understanding of others who are disabled. I especially have developed a strong connection to special needs individuals.”
Poskochil is not able to work full time, encounters people who do not believe that she is ill “because I look fine and I usually have a smile on my face” and can’t make plans or commitments, she said. She has lost friends and homes, “but not my dignity.”
More doctors know about the disease now, but there is still no local support group, she said. But Poskochil has found other IC patients through Facebook and appreciates their support.
“I tried it alone – it doesn’t work,” she said. “I dearly appreciate my IC Facebook friends; IC organizations; the few close friends I have (you know who you are); my doctors (Dr. Matthew Fryzek at Bluffs Family Health Care and Dr. Emily Kean at Adult Urology & Urogynecology) and all the specialists; and my employer, Sorenson VRS, for always accommodating me working part time.”
A couple of Poskochil’s Facebook friends shared concerns about the disease.
“We are in pain,” said Amy Humphrey Neilson of Oklahoma. “We need adequate pain management without being looked upon as drug seekers.”
Another friend pointed out that there are no public service announcements on TV about IC, which would do a lot to raise awareness.
Poskochil’s upbeat attitude has helped her persevere during her 12 years with IC.
“It is important to have a positive mind frame and to be able to laugh at ourselves,” she said. “Laughter is the best medicine. Check out my ‘Laughter is the best medicine for IC’ers’ on Facebook.”