April Lee used to have a full life.
“I used to have a career. I have a master’s degree in counseling,” she said. “I used to help people with disabilities get back to work.”
About six years ago, the Bowling Green woman had a severe case of endometriosis that was really debilitating.
“I had multiple surgeries for it, but I had a hard time getting well. I tried everything to get well. I’d been to more than 40 doctors,” she said. “I had pelvic pain, pressure, urgency (to urinate) and frequency. I had to get up at nighttime all the time. It got so bad I couldn’t even hold a teacup. You’re really fatigued. It takes a lot out of your body.”
Lee eventually found out she had interstitial cystitis which, according to the Interstitial Cystitis Network website at www.ic-network.com, is also known as bladder pain syndrome, painful bladder syndrome or hypersensitive bladder syndrome. Because patients often think they’re suffering from repeated bladder infections, it may take months or years to be diagnosed.
“It’s like having shards of glass in your bladder,” Lee said. “There’s not a lot they can do for the pain.”
As many as one in five women in the U.S. may be infected, local gynecologist Dr. Mark Yurchisin said.
“It’s a chronic pelvic pain syndrome due to inappropriate stimulation to the nerves in the bladder or urethra,” he said.
Symptoms include urinary frequency, urgency and pelvic pain, Yurchisin said. Patients often experience burning when urinating, wake up at night to urinate and have painful intercourse. The cause is unknown.
“It’s prevalent in both sexes, but it’s more common in women,” he said. “Men show the same types of symptoms as women. They may have pain in the testicles and scrotum. They usually see a urologist.”
Lee said she didn’t know anybody with the condition and wanted support.
“I would sit in (Yurchisin’s) lobby, and he had all these patients that I’d end up talking to,” she said. “I’m meeting people younger and younger who are coming down with IC.”
She gave Yurchisin a list of products that had helped her with interstitial cystitis and talked to him about staring a support group. The result is the Interstitial Cystitis Support Group, which will have its second meeting at 5:30 p.m. Wednesday at The Medical Center. Lee has also started a blog for the group at icsupportbg.blogspot.com.
“We want to get these women together and have a speaker and educate them on things that can really help,” she said. “A lot of doctors don’t know what to do with them. They get put on pain medicines that they can become addicted to.”
There is no cure for IC, but it can be controlled, Yurchisin said.
“We can restore patients’ lives in terms of their bladder and sexual function and reduce their pain so they’re just not suffering so much,” he said.
The condition is treated with dietary restrictions to prevent irritation to the bladder, Yurchisin said.
“What I find in my population is the need to eliminate acidic foods, nicotine, caffeine, alcohol and tomato-based products,” he said.
There are three drugs that are most commonly used – Elmiron, which helps the bladder heal, Elavil, which helps reduce pain and urgency, and Hydroxyzine, an anti-inflammatory, Yurchisin said.
“These therapies take a long time to work. The medications are slow-working,” he said. “The results may not be seen for three to six months. Substantial improvements may take a year or more.”
IC is very elusive, Lee said.
“It’s not always that you can follow the diet and things will be all right,” she said. “Sometimes it flares up. I go to the chiropractor and that seems to help.”
Watching her diet, reducing stress and having physical therapy can help, Lee said.
“Drink a lot of water and rest,” she said. “You have to listen to your body.”
Although it has been mentally hard to adjust to making the necessary changes to keep herself healthy, Lee said she plans to keep talking to people about IC so she can find others who may need help.
“Even though it’s your bladder and it’s not something people want to hear about, I try to talk about it,” she said.
Lee hopes the support group helps a lot of people.
“It is a very painful disease that’s not understood,” she said. “It means a lot to have support.”
Upcoming support group meetings will be at 5:30 p.m. Oct. 19, Nov. 16 and Dec. 14 at The Medical Center.
— For more information, email aprilslee@windstream.net.
