The Enemy Within

Imagine experiencing excruciating pain at least one week of every month: pain that leaves you curled in a fetal position or with your head over the toilet; pain that forces you to miss many days of school or work; pain that interferes with other aspects of your life, like intimate relationships. Or imagine fatigue so extreme it is debilitating. Now imagine your doctor dismisses your symptoms and tells you that your experience is normal, that it's all in your head.

In 1979, Mary Lou Ballweg had such an experience. At the height of a successful journalism and filmmaking career, her life took a drastic turn for the worse. While visiting her home state of Wisconsin, she was struck with a mysterious illness that left her bedridden. After countless trips to countless doctors, Ballweg was still sick and without answers. Only after months of endless research and a laparoscopy – which she demanded – did Ballweg receive a diagnosis: she had endometriosis.

Truth vs. Stereotypes

Endometriosis occurs when cells that normally line the uterus are found in other areas of the body (such as on the ovaries, bowel, and bladder, though in unusual cases it can be found in other areas of the body, such as a lung, arm, or thigh). It's not a pleasant diagnosis for any woman to hear – it's like being told that your insides are all in the wrong place and that your body is turning against itself. Like cells in the uterus, the rogue cells respond to the hormonal fluctuations of a woman's menstrual cycle – tissue builds up, breaks down, and bleeds with each period. However, if the internal bleeding has no way of leaving the body, as it does through the vagina from the uterus, it causes inflammation, pain, and scar tissue. But the symptoms are the most traumatic. Pain usually occurs during menstruation, during sexual intercourse, and with bowel movements. Pain can also occur during ovulation, urination, or internal examinations. Other symptoms include prolonged bleeding, irregular periods, and irritable bowel symptoms. Infertility is another fearful aspect of endometriosis, but not all patients have problems conceiving – many have healthy pregnancies, especially if the disease is found and treated early.

Ballweg found no relief in her diagnosis, not due to its unpleasantness, but because of the huge amount of misinformation about endometriosis. At the time, medical textbooks frequently stereotyped endometriosis as a disease that affected only "white, well-educated, perfectionist, thin career women." This astounding sexism and inaccuracy meant that many women went undiagnosed for years, and, when they were diagnosed, they were offered few treatment options. It also meant that whole communities of women – girls, twentysomethings, and those who weren't white – were being told they couldn't possibly have such a disease. Luckily for the five million girls and women in North America who live with endometriosis, grinning and bearing it wasn't something Ballweg thought women should have to do.

Ballweg believed that there had to be other women who were suffering as much as she was and that, together, they could try to fight the disease and the taboos surrounding it. In early 1980, with the help of a friend, Carolyn Keith, and the Bread and Roses Women's Health Center, she held the first group session for women with endometriosis, in Milwaukee, Wisconsin. In August of 1980, the group published their first brochure, What Is Endometriosis? and sent out a questionnaire, which resulted in 300 responses and a record amount of data. So began the Endometriosis Association (EA) and, with it, a new hope for a battle plan to tackle this terrible illness. Today, the organization boasts innumerable brochures, published in more than 30 languages. And there are more than 20 lay books, more than 30 medical texts, more than 6,000 research studies, and hundreds of endometriosis support groups worldwide.

Yet getting a diagnosis is still one of the steepest hurdles for those with the disease – on average, it takes more than nine years. Endometriosis is difficult to diagnose because it cannot be detected by an ultrasound; instead, doctors must perform a laparoscopy of the abdominal cavity. Though there are several treatment options that offer temporary relief, including surgery and hormone suppressants, they rarely provide a permanent cure. Most women try more than one treatment option and commonly have several surgeries, some as extreme as a hysterectomy. And endometriosis sometimes subsides during pregnancy, but returns after giving birth. Clearly, the symptoms and treatment of endometriosis are such that sufferers need the understanding and support of their partners, families, friends, and employers, which is where the EA comes in.

A Place to Turn

From the beginning, the EA has had to be a multifaceted support group, reflecting the complexity of the disease it is working to defeat. As president, Ballweg sometimes puts in more than 70 hours a week. Her days consist of coordinating the research program, tackling budget and grant concerns, editing manuscripts, and giving speeches. It's hard to imagine what keeps her going – especially considering that when she began the association she, too, was battling the debilitating disease. Ballweg, however, feels compelled to give her time. "Every day we hear terrible stories of lost dreams, lost hopes: not being able to have children, not being able to have normal sex lives, not being able to pursue careers," says Ballweg. "What would happen to these people if there was no place to call?"

Despite the headway made, the EA still has an uphill battle against misconceptions surrounding endometriosis – even within the medical community. A recently published study asserts that women who have sex more regularly are less likely to get endometriosis (a ridiculous and heartbreaking idea that the EA confronts on their website). Though Ballweg has her suspicions as to why such research is still being published, she won't comment further, except to say that she believes that patient groups, like hers, are needed to keep the field honest. She is also disturbed that endometriosis is pigeonholed by doctors as a gynecological problem rather than an immunological one, as research strongly suggests. "As long as it's perceived as 'just a disease for women,' it's not given as much importance," she explains and notes some serious aspects that are being missed, such as the correlation between endometriosis and higher incidences of breast and ovarian cancer, melanoma and non-Hodgkin's lymphoma. Women with endometriosis are also more likely to suffer from allergies, fibromyalgia, and chronic fatigue disorder. New research shows that they also have a very high risk of autoimmune disorders.

But one of the largest obstacles that Ballweg is striving to overcome is, surprisingly, the attitude of some women with endometriosis. "It's so common to hear women say, 'Oh, it's only my period,' with the assumption that maybe we don't even deserve good health related to our menstrual cycles," she sighs. According to Ballweg, women need to stand up and demand a change of attitude within the medical community and from the general public: "It's like every other social movement: when the people affected say, 'This is going to change,' it changes." In the meantime, there are still many more questions about endometriosis than there are answers. But with the unrelenting work of Mary Lou Ballweg and the Endometriosis Association, the answers are one step closer.

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