Endometriosis : No Cure Yet in Sight for Time of Pain

By WENDY HASKETT

Dec. 2, 1986 12 AM PT

SAN DIEGO — On a recent rainy evening, Rita McCrerey Vogel was setting out leaflets at UC San Diego Medical Center, getting ready for the monthly meeting of the San Diego Chapter of the Endometriosis Assn. She looked cheerful. She looked healthy.

“I am healthy, now,” she said. “I feel wonderful.”

She looked equally healthy four years ago, McCrerey Vogel said. Then, suddenly, she awoke in the night in excruciating pain.

“I had no idea I had endometriosis,” she said. “I’d never even heard of it.”

Many victims of endometriosis--all young women in their reproductive years--look healthy. This is a baffling disease.

“I was lucky,” said McCrerey Vogel, 30, who works as a social worker in a hospital. “I have a wonderful doctor who did a lot of detective work. But it isn’t uncommon for a woman with endometriosis to be told that her problems are all in her head!”

About 5 million women in the United States have endometriosis to some degree.

The problems start when endometrial tissue, which lines the uterus and is shed each month if there isn’t a pregnancy, begins to grow outside the uterus.

It can grow on the lining of the pelvic cavity, on the kidneys or the intestines, or in the area between the vagina and the rectum. The most common locations are in the abdomen, but it can migrate just about anywhere.

“Why it migrates is still a mystery,” McCrerey Vogel said.

Some women have only mild symptoms. Some have no symptoms at all; at least in the early stages. For others--as the tissue grows and spreads and develops into tumors, usually benign--it can mean harrowing problems.

It can mean infertility, painful sex and shattered relationships. It can mean intestinal bleeding, bladder problems and--the most common symptom of the disease--painful menstrual periods during which bleeding is so heavy, or so unpredictable, that it becomes a nightmare to be away from home.

It can be diagnosed by laparoscopy (a minor surgical procedure in which the patient’s abdomen is distended with carbon dioxide gas to make the organs easier to see). But if left undiagnosed, which it often is, it can make life miserable for both the woman and her family.

Untreated, long-term endometriosis can cement internal organs together.

Even in its early stages it can make about a week and a half of each month wretched for the girl or woman who has it.

The “vagabond” endometrial tissue responds to a woman’s monthly hormone cycle exactly the way it would do if it were in its proper place. It swells before it breaks down and bleeds. Depending on where in the body it happens to be situated, the pain, as a woman nears her period, can be agonizing.

“I was literally writhing on the floor of my office every month,” said Gina Pera, a lively brunette who heads the San Diego chapter of the association. “It was a magazine office--and we weren’t as formal as, say, Dun & Bradstreet. But you still don’t want to be writhing!”

That was in 1982. Pera trekked to five doctors before her sister, who was in nursing school, steered her to one who diagnosed endometriosis.

“One doctor told me I was bringing it all on myself because of my high-stress job as an editor. One told me to go on a vacation. And one terrified me by suggesting a hysterectomy,” said Pera, who was in her 20s at the time.

There are a lot of excellent doctors in this country, she said, “There just aren’t enough of them!”

By 7 p.m., the room at UCSD Medical Center held a dozen young women, gathered on a circle of chairs. One woman had brought her husband.

“We like to see husbands coming to the meetings,” McCrerey Vogel commented. “Usually the hardest thing about having endometriosis is the lack of understanding you encounter.”

Women who feel too ill at the time of their menstrual period to do anything but crawl into bed and gulp pain pills are often treated as neurotics, she said. Women of the ‘80s are not supposed to “give in” to “that time of the month.” Employers become exasperated. Friends lose patience and drift away.

This particular meeting of the San Diego chapter was a special one. The guest speaker was Mary Lou Ballweg, president and founder of the U.S.-Canada National Endometriosis Assn., a nonprofit organization devoted to education and research. Based in Milwaukee, it has helped more than 20,000 women since it was found seven years ago.

Ballweg, 38, also founded the world’s first endometriosis data bank.

A soft-spoken, fair-skinned woman and a former film maker, she suffered from the disease for 16 years. The odds of infertility are so high that having had undiagnosed endometriosis for so many years, she calls her 5-year-old daughter, Aquene, “my miracle baby.”

Her talk was titled “First, the Good News . . . “

“The good news is that in 1986 we know so much more than when we started seven years ago. The bad news,” she added gently, “is that we don’t like what we know.”

At this point, she told the circle of intently listening young women, there is no permanent cure for endometriosis. It can be arrested by pregnancy, but the myth that pregnancy cures it is just that--a myth.

Taking male hormones (a testosterone derivative such as Danazol) for nine months will shut down the action of the ovaries and usually sends the disease into remission for several years. It can also cause a weight gain that averages 30 pounds and, in some cases, heavier muscles.

A hysterectomy, or surgery to remove the migrant tissue, usually halts the problem. But even after a hysterectomy, if the ovaries are left, and if some tiny scrap of endometrial tissue is still lurking in some hidden recess of the body, it can regenerate; responding to the female hormone, estrogen.

Even after menopause, Ballweg told her audience, a severe case of endometriosis can be reactivated by estrogen replacement. It can begin growing again.

Another myth about endometriosis, one that spawned several articles in women’s magazines in the early ‘80s, is that it is the “career women’s disease.”

If, so the myth goes, a woman is white, prosperous, highly educated, and has chosen to postpone having babies because of her career, then endometriosis, like some Mother Nature-ish Sword of Damocles, may strike her down.

“That just isn’t true,” Ballweg said. “Twelve-year-olds can suffer from it. So can women from all ethnic groups.” There is a strong indication that it is also genetic, she said.

“There really is no answer except research. And it looks like the people who are going to have to push for research are the women with endometriosis.”

Ballweg then showed a film, a cartoon that she made herself. The central character is a man in his 20s called Joe. Joe suffers from endometriosis.

“I made this to keep my sense of humor and my sanity,” Ballweg said.

She said the dialogue in the film “came from letters we received or from calls we took on the crisis line at headquarters.”

“But the good news--the really good news--is that many members of the medical profession are taking endometriosis very seriously now,” she said. “We’re starting on the pathway of understanding.”

Before the San Diego chapter meeting wrapped up, the women shared, as they always do, any special concerns they had.

Several of them spoke about the side effects of the testosterone derivative they were taking.

“When I was taking Danazol, my shoulders went from a size 8 to a size 12. I could see them growing,” recalled McCrerey Vogel, who has been free of endometriosis symptoms for three years.

“And it doesn’t go away when you stop taking the drug. Some of our members get shoulders like fullbacks! But what are side effects compared to feeling so rotten you can’t function?”

The San Diego chapter has been meeting once, and sometimes twice, a month for three years. Guest speakers have included sex therapists, psychologists and gynecologists. Soon, they hope to start an outreach program of home visits “for women who have just had surgery, or are feeling too ill to make it to a meeting,” McCrerey Vogel explained.

“Basically we want women to know that we’re here for them,” said Pera, whose endometriosis is also in remission. “The worst part of the illness is that you feel so alone.”

When Pera found out about the San Diego chapter, McCrerey Vogel was heading it. Pera remembers calling her “and talking and talking and talking! I must have talked to poor Rita non-stop for at least an hour and a half.

“But everyone with endometriosis does that when they discover someone who understands what they have been going through.”