Agony can mystify doctors, leaving women frustrated, but there are answers ADDRESSING CHRONIC PELVIC PAIN

January 25, 1994|By Linell Smith | Linell Smith,Staff Writer

Rebecca Katz was 29 when she first felt the searing pain in her pelvis that was to change her life. Over the following months, as the pain increased, sometimes causing her to double over, she was examined by specialist after specialist: four gynecologists and two urologists.

Exploratory procedures revealed nothing. All the usual tests came back negative. One urologist told her she was "bladder obsessed."

Yet every day, the pain seemed to grow.

"I was going from doctor to doctor who was either dismissing me immediately or who was getting frustrated and then dismissing me," says the Baltimore marketing consultant, who is now 31. "They would say, 'We can't find anything wrong with you.' . . . I thought, 'Am I going crazy? What is this?' I felt like I was at the bottom of the hole. I was in such pain, and I didn't know where it was coming from."

Despite recent advances in treating women's health problems, physicians are often undecided -- or mystified -- by the sources and treatment of chronic pelvic pain, which affects thousands of American women each year. Until recently, many women with chronic pelvic pain -- generally described as pain which recurs regularly for a period of at least six months -- were thought to be imagining it.

Now physicians recognize that many women suffer from little-understood conditions, such as endometriosis, interstitial cystitis and irritable bowel syndrome, that are often difficult to detect. Other common causes for chronic pain include pelvic inflammatory disease, adhesions -- the result of organs "sticking" together because of inflammation, infection or surgery -- and musculo-skeletal problems.

In March 1992, after almost a year of constant pain, Ms. Katz found the right doctor. And got the first accurate diagnosis: widespread endometriosis, a condition in which uterine tissue grows outside of the uterus. She learned she also had interstitial cystitis, a painful inflammation of the bladder. In addition, there was evidence of irritable bowel syndrome, a condition caused by adhesions due to endometriosis.

The diagnosis was bittersweet news: All the time doctors had been assuring her nothing was wrong, her conditions had gotten worse. However, she felt immense relief from finally having answers.

"One of the things about pelvic pain is that it's invisible. It's hard for somebody who doesn't experience it to really know what it's like," Ms. Katz says. "They think, 'She's got cramps.' Cramps are a piece of cake. Cramps you can deal with. This type of pain takes on a totally different character. Some days it's a stabbing pain or a dull pain. Sometimes it feels as if somebody's putting me in a vice."

Chronic pelvic pain often involves a combination of several factors.

"We could logically arrange a list of causes of pelvic pain that's as long as your arm, even in small print," says Dr. James Dorsey, chairman of the department of gynecology at The Greater Baltimore Medical Center. "The structures that generally generate pain are the fallopian tubes and the ovaries, the uterus itself, the bladder in front, the rectum in back and the ureters which lead from kidneys to either side of the bladder."

Many hospital-based centers for diagnosing and treating chronic pelvic pain now emphasize a multi-disciplinary approach to diagnose and treat chronic pelvic pain using gynecologists, urologists and gastroenterologists. Because pelvic pain often increases before a patient's menstrual period -- a fact that implies a hormonal influence -- reproductive endocrinologists are often consulted.

And most chronic pain sufferers need psychological counseling to ease their fears as well as soothe the frustrations of having been told for months, maybe years, that there is nothing wrong with them.

"About three-quarters of the women who contact us have been told their pain is in their heads. Or that their pain is normal. Or that it's due to stress," says Mary Lou Ballweg, executive director of the Endometriosis Association, an education and research organization in Milwaukee.

"If they tell their doctors that having sex is painful, they've been told they are frigid. There has been this tendency not to take women's symptoms seriously, and that has been one of the major difficulties in diagnosis."

Many physicians are uncomfortable treating chronic pelvic pain patients, Dr. Dorsey says, especially if the standard set of tests does not yield a diagnosis.

"There are three things that many physicians shudder and quake at," he says, "premenstrual tension, menopausal symptoms and chronic pelvic pain. It's the terrible triad that women go through that is absolutely real, that is very, very challenging and sometimes very, very discouraging."

Detecting the cause -- or causes -- of chronic pelvic pain can require a long, often frustrating, process.

For instance, because no one knows the causes of or how to cure endometriosis or interstitial cystitis, recommendations for treatment vary.

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