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Ashley Killeen holds her kids Oliver (left), 4, and Sheamus, 6, at the family's Browns Mills, N.J., home on March 7, 2014. Killeen, 27, lives in constant pain due to Adhesion Related Disorder. / John Ziomek, (Cherry Hill, N.J.) Courier-Post

Ashley Killeen calls herself "one of the lucky ones."

It's been about four years since an obstetrician opened her belly to seek the source of her chronic abdominal pain. He discovered her uterus had stuck to her bladder, the result of excessive scar tissue from two cesarean sections.

At 23, the Browns Mills, N.J., mother of two little boys had a hysterectomy. Nearly a year later, the pain returned.

This time, it became her constant companion.

"I'm in pain every day," she acknowledged of her condition, Adhesion Related Disorder. "It hurts just to do normal, everyday things.

"I can't pick up my children. I can't run. I can't jump. I can walk. Some days, I can't even do that.

"I'm 27 years old, and some days I can't dress myself," Killeen added. "My organs are literally tugging and pulling on each other every day."

Adhesions are internal scars that commonly form as a result of surgery, infection or disease, according to the American Society for Reproductive Medicine. Most of the time, they don't cause any problems, but for patients like Killeen, they can be devastating.

Adhesions can contribute to infertility and miscarriages. They are second only to cancer as a cause of potentially fatal bowel obstructions.

It's not known which patients will suffer such problems and which won't, explained Dr. Jennifer Hummel, an OB-GYN for Rowan University School of Osteopathic Medicine. It's a patient-specific problem.

Indeed, some patients Hummel sees are filled with scar tissue without any ill effect.

"A lot of it is dependent on what scars to what," said Hummel. "Some people do have a lot of pain."

Additional surgery can remove adhesions, but surgery can also exacerbate the symptoms.

Last year, Killeen formed a Facebook group for patients with the disorder, whose name was coined by David Wiseman, a medical researcher and founder of the International Adhesions Society.

After talking with others who share her symptoms, Killeen has opted against additional surgery for now.

"I've only had three surgeries," she said. "Other women have had 10, 20 or 30 of them."

Laurie Hodges of Decatur, Texas, helps moderate the Facebook group. Two years ago, she had open abdominal surgery to treat diverticulitis. Within weeks, she returned to her doctor complaining of burning and pulling with every movement.

Adhesions had formed within her bowels; additional surgery made it worse. Hodges can't take opioid pain medications because they slow digestion. Because it hurts, she eats every third day. She lives in fear of a bowel obstruction.

'"No one can tell me what's going to help. ... It's just so incredibly frustrating. I've sat in front of surgeons, and they tell me adhesions don't hurt. It feels like labor pains."

Deb Wilson of Hunterdon County has lived with such pain since 1976. The 57-year-old mother of four has had 14 surgeries; doctors have removed every organ they can.

She doesn't have good days. She has "OK days" and "terrible days."

"You start to feel like you're going crazy," noted Wilson, who works from home as a child-assault prevention coordinator.

"I think what's really frustrating to me is that, because a lot is not known about ARD, we get that blank stare on people's faces, whether it's doctors, friends, family or whatever. I don't like to talk about it with people because they don't understand.

"My husband understands, and my kids understand," she added. "Just having somebody say 'I believe you' is the best thing somebody can say."

Wiseman founded the International Adhesions Society after a patient told him in the mid-1990s she was considering suicide. Her phone call scared him.

"I said, you know, we have to do more to help these patients," he recalled. "We have to understand more of what's going on here.

"We can't just look at this as a surgical thing."

Wiseman spearheaded the use of an FDA-approved wearable ultrasound device to help patients cope with adhesion-related pain without medication. The PainShield MD device was developed by NanoVibronix.

The PainShield helps between 75 and 80 percent of patients, he said, but it is not covered by most insurance. And more clinical research is needed to determine its effectiveness for a larger group of patients.

Adhesions may not even be the true cause of pain for some patients, Wiseman explained. For some, the problem may be related to biochemical changes to their nervous system.

"We've got a long way to go," he added.

As for Killeen, support from 112 other patients on Facebook has offered her some solace. But she wants a solution.

"This is how I'm living, how thousands of other people are living. I'm dying for some help here," she said.

To learn more about Adhesion Related Disorder, visit www.adhesions.org



Copyright 2014 USATODAY.com

Read the original story: Adhesion disorder patients suffer invisible pain

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