Darrell Sapp, Post-Gazette The heating pad pressed to her right side is Laura Orr-Sullivan's frequent companion. She has near constant pain from Adhesions Related Disorder. Click photo for larger image. Related story Q & A on Adhesions

At 35, Laura Orr-Sullivan should be enjoying the prime of her life.

But she's not.

Instead, the South Side resident spends the bulk of her days performing sedentary tasks in the "cushy prison" of home, often hunched over in pain.

She drags a heating pad from room to room to soothe twisting, pulling and, at times, knife-sharp sensations in her lower right torso. She uses the pad so much that it gives her occasional blisters.

Climbing stairs hurts. Lifting laundry hurts more. Not being able to fully interact with the world hurts most. It's been this way on and off for 15 years.

"I feel as if I have many lost years in my life and I can't blame it on anything like hitch-hiking through India. I lost those years in my apartment," she said.

Orr-Sullivan is among thousands of people across the United States who have chronic abdominal and pelvic adhesions, also known as Adhesions Related Disorder.

Adhesions are fibrous bands of scar tissue that form abnormal connections inside the body after surgery, infection, irritation, gynecological conditions such as endometriosis or other tissue trauma. They can be thin and filmy (like plastic wrap) or dense and expansive. They usually form at the site of tissue injury, such as a surgical incision.

Adhesions can develop in the heart, spine and other places but most frequently appear in the abdominal and pelvic cavities because more organs are there. Most never cause pain.

"Most of the time, they're inconsequential," said Dr. Ted Lee, a gynecological surgeon at Magee-Womens Hospital.

Adhesions become problematic when, during healing, organs and other structures that normally slide freely against each other get stuck. These restrictions can disrupt the function of organs, putting a person at risk for serious problems such as chronic pain, bowel obstruction or infertility.

Providing awareness, support

Each year there are more than 400,000 adhesion-related hospital admissions in the United States, according to Anthea Nesbitt, of Columbus, Ohio, co-founder of the American Adhesions Support Group. The Web site, www.bombobeach.com, which registers more than 650 hits daily, offers emotional support, education and advocacy. The Web site is shared with its mother organization, the Australian Adhesions Support Group.

Nesbitt, a Bellevue native and sufferer since 1995, said the organization aims to educate health care providers, government agencies and the general public. One goal is to get the medical community to recognize that adhesion sufferers need help from professionals, including those who can address psychological issues.

"The condition is emotionally devastating for sufferers. Their lives have become so compromised by their pain. A lot of them have lost their jobs or their spouses, or intimacy becomes a problem. It affects their lives in so many ways," Nesbitt said.

Compounding matters is that treatment and management of adhesions are controversial. Not only are they difficult to diagnose, but some doctors don't believe they cause pain. Patients often wind up misdiagnosed or dismissed.

"It's an 'insidious' disorder. We're usually told we have irritable bowel syndrome or need psychological help because we're depressed. Well, we usually do end up depressed because nobody listens to us," Nesbitt said.

Orr-Sullivan was told those things over the course of six operations since 1989 (five related to adhesions or endometriosis, plus a hysterectomy). One doctor even "fired" her as a patient because he couldn't justify continuing to prescribe a painkiller to her.

Dr. Harry Reich, a gynecologic laparoscopic surgeon and consultant to local hospitals, said the adhesion community does tend to get neglected. He's performed more than 2,000 abdominal and pelvic adhesion surgeries, including Orr-Sullivan's most recent operation.

"There are doctors and consumers who think once they do surgery, that's it; everything's over with. But in reality, anytime that anyone has surgery there's a chance they'll develop adhesions and a chance that those adhesions will cause them further problems down the line," he said.

A New Castle resident who asked not to be identified, recalled taking ill at her daughter's Cranberry home on Mother's Day 2002. Stricken with nausea and diarrhea, she thought it was the flu because family members were fighting the virus.

The discomfort grew into severe abdominal and lower back pains that, by morning, left her curled up and moaning on the bathroom floor. A family member called rescue workers.

"It was too painful to even open my eyes as they were wheeling me into the ambulance. I couldn't focus on anything but the pain. I remember thinking, 'It's OK if I die.' That might sound melodramatic, but that's how bad I felt," she said.

Through surgery she learned that adhesions, which developed after a 1974 gallbladder operation, had twisted her bowel and cut off its blood supply. Her pain subsided that July.

Orr-Sullivan wasn't as lucky. Her last surgery, in June 2003, offered a month of relief; then "healing pain turned into familiar pain," which continues. She's investigating further adhesion surgery with Reich at his Wilkes-Barre office.

In some cases, when pain doesn't go away within months of surgery, it may be because adhesions had little or nothing to do with it in the first place.

"There's no question that adhesions cause pain in some patients. But the mere existence of adhesions does not prove that a patient's pain is from [those] adhesions,'' Lee said.

Underlying factors

Usually the inciting factor turns out to be an underlying medical condition such as endometriosis, in which patches of endometrial tissue, normally found only in the uterine lining, grow outside the uterus.

Postsurgical adhesions are most common. Surgeons can reduce the chance of their development by handling tissues delicately and following other meticulous surgical techniques. An adhesion barrier may help too, Lee said.

		Learn more For more information on the American Adhesions Support Group, contact Anthea Nesbitt via e-mail at anthea@bombobeach.com or by letter at P.O. Box 152, 1215 Polaris Parkway, Columbus, Ohio 43240.

This is a fabric sheet or gel placed on an organ to help its tissue heal without attaching to anything.

The FDA has approved only two gynecologic and pelvic barriers, although some surgeons don't use them, believing they're minimally effective. Nesbitt said other sufferers are eagerly waiting federal approval of "SprayGel," a barrier successfully used in Australia and Europe.

CEO and president Amar Sawhney of the Waltham, Mass.-based Confluent Surgical Inc., which developed SprayGel, said the product differs from other adhesion barriers in that it undergoes a chemical transformation inside the body -- from liquid to solid gel and back to liquid. The change enables it to be applied through small holes and sprayed onto organs.

Plans for a clinical trial of SprayGel are being developed.

Nesbitt said the best barrier in the world may not be enough to ease sufferers' pain. "There's never any guarantee with any type of surgical procedure. That's why our ultimate goal is to educate patients -- so they can make informed treatment decisions on their own."