A Difficult Case to Diagnose

Many of the patients were desperate. By the time they arrived at the dowdy little hospital in San Bernardino County, they had lived for years with excruciating pelvic and bladder pain. Doctors repeatedly had told them there was no known cause or cure.

Most were women, who said their lives were being ruined by two baffling disorders--interstitial cystitis and vulvodynia. They said they felt dismissed, patronized and sometimes humiliated when they took their problems to the predominantly male world of urology.

So they had turned to Dr. Larrian M. Gillespie.

Gillespie offered hope for the hopeless. She was a UCLA-trained urologist, one of the few women in her field. She had built a nationwide following through a marketing campaign of free seminars and videos. Now, she was touting a controversial treatment for chronic pelvic pain: spinal surgery.

Hundreds of patients flocked to her Pelvic Pain Treatment Center at Doctors Hospital of Montclair, a struggling hospital in a working-class neighborhood. But Gillespie’s patients got royal treatment. They were flown in from around the country at hospital expense, put up in hotel suites and chauffeured to appointments in limousines.

Unknown to the patients was their role in a lucrative medical marketing scheme involving Gillespie, the hospital, a giant health care corporation later caught up in scandal, and a neurosurgeon, Kenneth P. Burres, with a troubled professional past.

The hospital company lavished perks on the doctors, counting on them to “infuse volume,” as one former marketing executive described it, by delivering large numbers of surgical patients with generous medical insurance plans.

The arrangement’s commercial flavor is captured in a series of memos written by Gillespie, who signed one letter to the then-hospital administrator: “Your Megabucks Baby, Larrian.”

And its medical legitimacy has been challenged in a series of malpractice and fraud lawsuits filed in Los Angeles accusing the two doctors of conspiring to perform unnecessary spinal surgery that had no medical or scientific basis. Both deny wrongdoing.

The story of the pelvic pain center, as gleaned from interviews, court and hospital documents, state regulatory files and medical journals, is a cautionary tale about for-profit medicine.

And it raises doubts about the diligence of California medical regulators and hospitals in policing doctors. (See related story).

At its center is Gillespie, a once-promising physician who inspired passionate loyalty among many patients--and who assured the hospital’s top executive she would “purr all the way to the bank for you” if he would equip her next limousine with a VCR.

Was she a pioneering physician who had battled sexism throughout her career, and was now the inventor of a promising new treatment for these baffling illnesses? Or did she become so consumed by greed that she used her gender to take advantage of vulnerable patients?

Several former patients speak of Gillespie with reverence and, as legal problems have mounted, have rallied to her defense. Many wrote letters of thanks and expressed regret when she closed her practice in 1995. More than a dozen called and wrote The Times--mostly at Gillespie’s behest--to offer testimonials.

“Like Louis Pasteur . . . and other medical pioneers, Dr. Gillespie has shown great courage in healing her patients, despite the opposition of the medical establishment,” wrote Eleanor Egan of Costa Mesa.

Gillespie herself says: “When you’re a pioneer, you get arrows in your back.”

$2.6 Million Paid to Settle Claims

A strikingly different picture emerges from the lawsuits filed in Federal District Court in Los Angeles by 10 former patients of Gillespie and Burres.

In February, Gillespie--whose California medical license was recently suspended for reasons unrelated to the suits--agreed to pay $2.6 million to settle the claims against her. At least two other former spinal-surgery patients have sued Gillespie, who recently settled with one of them for an undisclosed sum.

Despite the settlements, Gillespie denies the charges in the lawsuits. In an interview, she said: “My heart has been so wounded in this. My life has been sharing knowledge and teaching women how to take care of themselves. . . . I’m an injured party in all this too.”

The 10 lawsuits in Los Angeles continue against Burres and Tenet Healthcare, the hospital’s former owner. Tenet, which was previously named National Medical Enterprises, declined comment.

Burres, 51, declined to be interviewed. But his lawyer, Brian Depew of Los Angeles, strongly denied wrongdoing by his client.

Betty Stiehl knew something was wrong the moment the doctor entered the examining room with her MRI report.

“His expression about scared me to death,” recalls the antiques collector from suburban Atlanta.

“He said, ‘Mrs. Stiehl, you are in terrible shape. My advice to you is to get on a plane to California and take an attorney with you. There’s not a thing I can do for you.’ ”

What a chilling turnabout from a few weeks earlier, when Stiehl and her husband, Norman, boarded a Los Angeles-bound flight in buoyant spirits. It was March 1994, and they were headed for an appointment with Gillespie.

After years of battling vulvodynia, a debilitating disorder that causes severe pain and burning in the genital area, Stiehl was at wit’s end.

“I had been to every type of doctor humanly possible--even a hypnotist,” says Stiehl, 70. “I was desperate.”

Then she heard about Gillespie, who had just swept through Atlanta on a publicity tour.

Stiehl says none of the many specialists she had seen had mentioned spine surgery. She says she did not even have back problems. Even so, the Stiehls decided to go ahead with the operation. “I blocked out everything else except, ‘I’m finally going to get some relief,’ ” she explains.

Burres performed the operation March 22, 1994, with Gillespie assisting. Burres, a Stanford-trained physician, removed two discs from Stiehl’s lower back. Then, to immobilize her bones until the spine fused naturally, he constructed an Erector-set-like implant of two metal plates, slightly smaller than business cards, and four two-inch-long screws.

Within a month, Stiehl was “almost insane with pain.” And when another doctor told her nothing had been wrong with her back in the first place, she found a lawyer.

“This was one of the most egregious and planned violations of a spine that I have ever seen,” said that doctor, Thomas E. Whitesides, an orthopedist at Emory University medical school in Atlanta, who treated Stiehl after her operation.

Stiehl says Gillespie and Burres recommended surgery without performing physical examinations. Her spine was normal for a woman of her age, said Whitesides. Indeed, a Montclair radiologist, Steven R. Cobb, had agreed, but was ignored. On the MRI report Gillespie and Burres had ordered before surgery--the one, says Stiehl, that the two doctors assured her indicated serious spine disease--Cobb had written: “No disc herniation evident.”

Stiehl is among those who sued Gillespie and recently settled with her.

“The surgery had no hope of favorably affecting her problem,” said Whitesides. “It only had hope of causing mayhem.”

Said Gillespie: “All of these patients in the lawsuit have a long history of back problems. Their past medical records were rife with evidence of being treated by back specialists.”

“The cause is unknown, the diagnosis is difficult and treatment is temporary and difficult,” researchers said of interstitial cystitis in a urology medical journal 25 years ago.

Today, that statement largely holds true.

It’s been estimated that 500,000 Americans--90% of them women--have the disease.

The major symptoms include a frequent need to urinate. People with severe cases may make up to 50 trips to the bathroom daily and be up every half an hour at night. Another symptom is severe pain, likened by patients to “razor blades in the bladder.”

Sleep deprivation, anger and serious, even suicidal, depression may follow. Sex intensifies the pain for many patients. Marriages and careers frequently are destroyed.

Vulvodynia afflicts about a third of patients who have interstitial cystitis.

Stories of Pain and Humiliation

In interviews, women recounted humiliating stories of male doctors dismissing their pain as imagined or due to sexual frustration. “You’re like an old dog in heat,” one patient recalls her doctor saying. Others were told they must be lesbians--or crackpots.

“There are still many urologists who tell these patients they are crazy,” says Dr. Kristene E. Whitmore, the urology chairwoman at the University of Pennsylvania.

These chronic sufferers were a receptive audience for anyone who promised relief.

And that was what Gillespie offered on radio and TV talk shows such as “Good Morning America.” Her specialty of treating women’s disorders won mentions in newspapers including the Los Angeles Times and the New York Times.

Described by colleagues as flamboyant and strong-willed, Gillespie was the very image of a hotshot doctor, complete with an office in Beverly Hills and a taste for limousines.

That was until 1995, when, faced with malpractice suits and a messy divorce, she closed her practice.

In divorce filings last year, she said “a nervous breakdown” left her “unable to function . . . as a physician and surgeon due to my inability to concentrate, to make proper decisions and to process information.”

Then, on Dec. 3, the California Medical Board suspended her medical license for “repeated negligent acts” not involving spinal surgery. Among the board’s findings were that in her treatment of four urology patients in 1993 and 1994, Gillespie ordered excessive and unnecessary lab tests, made diagnoses with insufficient evidence and failed to perform routine physical exams.

Her lawyer, Robert C. Reback of Los Angeles, said his client decided not to contest the board’s claims for economic and other reasons.

A spokeswoman said the board is aware of the lawsuits against Gillespie and Burres and that the matter is “under review.”

Larrian Marie Gillespie set out to become a doctor at age 5, she says, when her parents gave her a microscope as a birthday present.

Raised in Los Angeles, the daughter of Canadian vaudeville performers, she and her sisters enjoyed early success in Hollywood. Larrian had small parts in “Bonanza,” “The Red Skelton Show” and “The Twilight Zone.” Her sister Darlene was one of Disney’s original Mouseketeers.

Her brush with Hollywood was but a means to an end, Gillespie says. She used the acting money to help pay for medical school.

“Medicine,” she quipped in the interview, “is show business with a knife.”

Described as “talented, industrious and ambitious” by a department chairman at UCLA Medical Center, she was the university’s first female urologist. The second-year resident appeared on Parade magazine’s cover in 1977 for an article about women doctors entering male-dominated specialties.

In the article, Gillespie, then 27, described with “considerable bitterness” her struggles to persuade male colleagues of her abilities.

In her interview with The Times, Gillespie said: “You think the Citadel’s a situation now? Go back 20 years and be the first woman in the urology department at UCLA. It weren’t no fun and games.”

As a women’s health specialist, Gillespie was a rising star in the early 1980s.

Thanks in part to her skill at wooing the media, she became well-known to those who suffer from interstitial cystitis and vulvodynia. She gained a reputation as an inventive doctor who touted unconventional treatments--such as low-acid diets and drug therapies--that other urologists ridiculed. Today, such diets--which other doctors say didn’t originate with her--are recommended.

In 1986, Gillespie co-authored a book whose title--”You Don’t Have to Live With Cystitis!”-- promised hope to thousands. “A groundbreaking guide by a doctor who is making medical history,” declared the book jacket.

Patients dubbed it “the pink bible,” referring to the color of the softcover edition.

“Finally, here was something a patient out in the Ozarks could show their doctor and say, ‘Look at this, I’m not making this up,’ ” says Jill Osborne of Santa Rosa, who leads an interstitial cystitis Internet support group.

In 1989, Gillespie ran afoul of the Food and Drug Administration, which banned her from clinical research trials for new pharmaceuticals after accusing her of illegally selling an experimental drug to treat interstitial cystitis and exposing patients to “an unreasonable and significant risk of illness” by adding unauthorized substances to the drug.

Gillespie attributed the FDA incident to a single “technical mistake.”

Controversial Theory About Pelvic Disorders

In 1991, with several Los Angeles doctors, she published a little-noticed research paper concluding that spinal surgery had shown effectiveness in relieving pelvic pain for interstitial cystitis patients who also had spinal disease. After peer review, the study was published in the British Journal of Urology.

Gillespie contends that the modest study--which tracked nine patients for six months after surgery--laid a scientific foundation for her theory about one cause of interstitial cystitis and other pelvic pain disorders. Her theory is that these disorders are often caused by back problems.

Spinal problems, she contends, can create pressure on nerves in the lower back that lead to the bladder or pelvic area. Through back surgery, the pressure on those nerves is relieved, she says.

But some of the nation’s leading authorities on interstitial cystitis and other pelvic disorders said in interviews that the study had serious methodological flaws. None said they knew of any credible research that justified spinal surgery for treating interstitial cystitis or vulvodynia.

“There is no scientific data or basis for saying that back surgery should do anything for this disease,” says Dr. Philip M. Hanno, chairman of urology at Temple University medical school.

One of the study’s coauthors, Dr. Richard B. Delamarter, a UCLA orthopedist, said Gillespie “went beyond the scientific findings with how she was treating patients.” He said patients in the study had disabling back problems that warranted spinal surgery. The patients suing Gillespie and Burres say they had no such back problems.

A few colleagues who worked with Gillespie think she may have been on to something. Dr. Norman Levin, a Los Angeles anesthesiologist and another coauthor of the 1991 paper, said the study provided anecdotal evidence of a link between spinal problems and interstitial cystitis.

And several former patients of Gillespie’s say that spine surgery alleviated their pelvic disorders.

One is Jayne Tilley-Mickas, an interior designer from Bellingham, Wash., who battled interstitial cystitis and back pain for years. At Gillespie’s recommendation, Tilley-Mickas said, she underwent spinal surgery in 1990 to repair a pinched nerve in her lower back.The surgery, she says, not only relieved most of her back pain but helped her interstitial cystitis: “I have no doubt in my mind that this [surgery] is what helped my bladder.”

Gillespie says 114 of her pelvic pain patients had back surgery at various hospitals. Of those, 12 are known to have filed malpractice suits. It is not known how many others believe they were helped--or harmed--by the procedure.

In 1991, Gillespie was recruited to set up a pelvic pain clinic at Doctor’s Hospital of Montclair, one of 35 general hospitals in the National Medical Enterprises chain.

The 100-bed hospital was filling about 40% of its beds, according to former hospital officials. Gillespie could deliver patients--and revenue--to the hospital and its corporate parent.

“She had a pretty big following,” said then-chief executive Peter Bastone, who took the top job at Montclair in 1991 with the charge of turning a money-losing hospital into a money-maker.

Lucrative Business for Hospital

That same year, National Medical would be swept up in one of the biggest health fraud scandals in U.S. history. It paid a $380-million fine for making false medical claims and paying kickbacks to doctors and others for patient referrals.

(National Medical Enterprises sold the Montclair hospital to Pacific Physicians Services in August 1994, which itself was acquired about a year later by MedPartners. MedPartners officials said the company closed the clinic soon after acquiring the hospital).

To attract Gillespie, the hospital agreed to spend at least $50,000 to help market her program, pay her clinic’s operating expenses and provide a toll-free number for patients. She would also get a $7,500-a-month hospital directorship, according to internal hospital documents exchanged by attorneys in the lawsuit.

In several 1991 memos sent to Bastone, Gillespie vividly described the financial rewards that she--and the hospital--were beginning to realize.

The documents talk of wooing out-of-town patients and moving them through a five-day program in assembly-line fashion, scheduling operations days in advance for patients who hadn’t been examined. Gillespie described enticing patients with offers of free air fare and hotel stays.

A 1994 Gillespie memo to Charles L. Baker, who succeeded Bastone, noted that “for every dollar you spend on marketing for me, you receive greater than a 5-1 return.”

Discussing a Las Vegas marketing blitz with another official, she wrote that the hospital should pay air fare for a patient and a guest:

“As you know, each patient results in a guarantee of $1,100 blood work, $4,500 hospital fee, and additional $1,000-$3,000 for MRIs, ultrasounds and gallbladder work. Therefore, it would be penny-wise and pound-foolish to not offer the additional air fare of $130.”

Beyond such diagnostic fees, spinal-surgery patients’ bills sometimes exceeded $60,000, shared by Gillespie, Burres and the hospital.

The marketing program was aimed at patients with traditional fee-for-service insurance, said Kathi Sankey, a former business manager at the hospital, in a sworn deposition taken for the lawsuits.

Such plans are less likely than HMOs to question medical bills. Gillespie’s memos indicate a willingness to settle for insurance payments of 70 cents on the dollar.

Bastone recalled in an interview, “It was a very difficult hospital to keep going under the pressure of being for-profit and making the required return on investment. There was pressure to be creative and generate some interest.”

Gillespie’s flamboyance contrasted sharply with life at the little hospital. Especially galling to some was the chauffeured limousine.

Gillespie says she needed the limousine to relieve the stress of the long drive from her West Los Angeles home to Montclair.

The hospital’s decision to grant her surgical privileges was “extremely controversial” among the medical staff, said Dr. Stanley R. Saul, a former chairman of the hospital’s surgery department.

He said others believed she lacked adequate training, noting that Gillespie is not even board-certified in urology. Board certification, often required by insurers, means a doctor has passed a series of difficult examinations.

Gillespie acknowledged that she twice flunked the examination for board certification in urology and was disqualified on a third occasion. She blamed one failure on emotional distress over a divorce and child-custody battle and said she canceled another try after being raped at gunpoint in 1983.

As the patient traffic at the pelvic pain center grew, Saul says, doctors became suspicious and whispered about the “particularly controversial surgery” being performed on some of Gillespie’s patients. “It became a joke,” he says. “Like, how many normal patients were operated on this week?”

As she shows a visitor around her 10 acres on picturesque Whidbey Island, north of Seattle, one can’t help but notice how Diana Griffin walks.

Her body is stiff, her steps slow and deliberate.

Griffin, 50, heard of Gillespie in 1987 when the doctor appeared on a Seattle TV talk show. Seven years later, she underwent surgery by Burres and Gillespie for interstitial cystitis. She says she is worse now than before the operation.

Although friends and family encouraged her to sue, Griffin said that after a court battle to get her insurance company to pay the $70,000 bill, she had neither the physical stamina nor the will.

Of Gillespie, she said:

“She would imply that she was more sympathetic to women who suffered this because it is largely a women’s disease. . . . I thought I saw a messiah here.”

Four days after surgery, Gillespie sent a crew to Griffin’s hotel to tape a promotional video. Such videos were important to the hospital’s marketing program.

A pain-racked Griffin rode a wheelchair through a small rose garden at the hospital while the crew taped and Gillespie prompted her on what to say, according to Griffin. At one point, Griffin said, the crew asked if she would walk up a flight of stairs so they could tape another scene. Eager to please, she did. The pain, she recalls, was excruciating.

She recalls Gillespie saying, “We have some primo stuff here.”

Asked about Griffin’s complaints, Gillespie said, “This is a shock to me because Diana has been a patient of mine for a long time, and the last I knew she was doing so well.” She said she knew nothing about Griffin being asked to walk up stairs: “I wouldn’t do that to a patient.”

Griffin says the surgery has diminished her life. She can, for example, no longer dig for clams at the nearby beach. Yet she says she harbors no bitterness toward Gillespie and believes her intentions were once honorable.

“I think she had a genuine interest in wanting to help people. Somewhere along the line, she succumbed to greed.”